Cerebral Palsy Patient Stories
Jona Ghelli (16 years old), CP
Home: Holliston, Massachusetts
As reported in the Metrowest Daily News
by Kendall Hatch
HOLLISTON - For most families, they're improvements that would largely go unnoticed - incremental steps in a child's development.
But for the Ghellis, they're improvements that have always seemed out of reach until a recent trip to Germany.
Jona Ghelli, a Holliston 16-year-old, has cerebral palsy and microcephaly, resulting in significant cognitive and physical impairments. She also suffers from a seizure disorder.
Jona and her parents, Joanne and Paul, got back a few weeks ago from, Germany, where Jona underwent stem cell treatment.
Although life has since returned to its normal pace in the Ghelli household, Joanne Ghelli said she is still thrilled with the results of the treatment.
"Jona's doing great," she said. "We saw improvements almost immediately."
During the procedure, adult stem cells were taken from Jona's hip bone and sent to a lab before being injected back into her spine.
Joanne Ghelli said the first hint that the treatment had a level of success came only hours after Jona underwent the procedure.
She said that in the evening after Jona underwent the treatment, Jona was laying down and started getting headaches and chills, common side effects of the treatment.
Joanne Ghelli said Jona became nauseated and she was helping her up when two words slipped out.
"She immediately started screaming, 'Can't move,"' said Joanne Ghelli.
Joanne Ghelli said the seemingly run-of-the-mill statement was important because Jona had always had trouble expressing when she was sick or in pain. "I'm saying to myself, 'Wow, she's telling me."'
A few days later, when touring a castle in Frankfurt, Joanne said she was holding Jona's hand, which was totally relaxed. Damage to the motor control centers in Jona's brain cause increased muscle tone, making her muscles stiff. Joanne Ghelli said it used to hurt to hold her daughter's hand.
There are other small improvements, too, like when Jona is getting dressed. Joanne Ghelli said she used to have to struggle to get a pair of pants onto Jona, but now she doesn't fight back and even points her toes into the pant legs instead of keeping her feet at a 90-degree angle.
But perhaps most encouraging, Jona's mother said, are the small steps she has made in cognitive ability and her ability to voice her needs.
"She is verbalizing so much more," she said. "You can absolutely have a short conversation with her...She says things like, 'Mom, can you help me dress? I need help. I can't do it."'
In the past, Joanne Ghelli said, that sentiment would usually be conveyed with a "Help Jona."
Joanne Ghelli said that since Jona returned on Oct. 10, her instructors have noticed improvements as well.
She goes to a Curves fitness center once a week, where her physical education teachers usually have to prompt her to use machines. Same goes for the therapeutic horseback riding sessions she attends - she uses balancing techniques where she puts an egg on a spoon and switches hands. The switch would usually require prompting from her instructors as well.
Since the treatment, Jona has been making those moves on her own without any prompting.
"It was well worth it," Joanne Ghelli said of the treatment. "We're definitely going to be going back again."
The family received more than enough financial help for the first trip - the procedure cost about $12,000, and through community fundraising they were able to raise about $15,000.
The extra cash, Joanne Ghelli said, is sitting aside waiting for the family's next trip to the center, and family friends are already working on the next round of fundraising for a future trip.
Home: Holliston, Massachusetts
As reported in the Metrowest Daily News
by Kendall Hatch
HOLLISTON - For most families, they're improvements that would largely go unnoticed - incremental steps in a child's development.
But for the Ghellis, they're improvements that have always seemed out of reach until a recent trip to Germany.
Jona Ghelli, a Holliston 16-year-old, has cerebral palsy and microcephaly, resulting in significant cognitive and physical impairments. She also suffers from a seizure disorder.
Jona and her parents, Joanne and Paul, got back a few weeks ago from, Germany, where Jona underwent stem cell treatment.
Although life has since returned to its normal pace in the Ghelli household, Joanne Ghelli said she is still thrilled with the results of the treatment.
"Jona's doing great," she said. "We saw improvements almost immediately."
During the procedure, adult stem cells were taken from Jona's hip bone and sent to a lab before being injected back into her spine.
Joanne Ghelli said the first hint that the treatment had a level of success came only hours after Jona underwent the procedure.
She said that in the evening after Jona underwent the treatment, Jona was laying down and started getting headaches and chills, common side effects of the treatment.
Joanne Ghelli said Jona became nauseated and she was helping her up when two words slipped out.
"She immediately started screaming, 'Can't move,"' said Joanne Ghelli.
Joanne Ghelli said the seemingly run-of-the-mill statement was important because Jona had always had trouble expressing when she was sick or in pain. "I'm saying to myself, 'Wow, she's telling me."'
A few days later, when touring a castle in Frankfurt, Joanne said she was holding Jona's hand, which was totally relaxed. Damage to the motor control centers in Jona's brain cause increased muscle tone, making her muscles stiff. Joanne Ghelli said it used to hurt to hold her daughter's hand.
There are other small improvements, too, like when Jona is getting dressed. Joanne Ghelli said she used to have to struggle to get a pair of pants onto Jona, but now she doesn't fight back and even points her toes into the pant legs instead of keeping her feet at a 90-degree angle.
But perhaps most encouraging, Jona's mother said, are the small steps she has made in cognitive ability and her ability to voice her needs.
"She is verbalizing so much more," she said. "You can absolutely have a short conversation with her...She says things like, 'Mom, can you help me dress? I need help. I can't do it."'
In the past, Joanne Ghelli said, that sentiment would usually be conveyed with a "Help Jona."
Joanne Ghelli said that since Jona returned on Oct. 10, her instructors have noticed improvements as well.
She goes to a Curves fitness center once a week, where her physical education teachers usually have to prompt her to use machines. Same goes for the therapeutic horseback riding sessions she attends - she uses balancing techniques where she puts an egg on a spoon and switches hands. The switch would usually require prompting from her instructors as well.
Since the treatment, Jona has been making those moves on her own without any prompting.
"It was well worth it," Joanne Ghelli said of the treatment. "We're definitely going to be going back again."
The family received more than enough financial help for the first trip - the procedure cost about $12,000, and through community fundraising they were able to raise about $15,000.
The extra cash, Joanne Ghelli said, is sitting aside waiting for the family's next trip to the center, and family friends are already working on the next round of fundraising for a future trip.
Avaia DiMarco, CP
By Karena Walter / The Tribune - St. Catharines, Canada
ST. CATHARINES - Avaia looks at people's faces.
That's the biggest difference her mother has noticed since the community rallied to send the two-year-old for special bone marrow stem cell treatment.
She had trouble paying attention before. Her eyes would wander constantly. Lights attracted her attention but not her focus.
"Since we've been back, she's taking time to look at things, she's focusing a lot better, even on people's faces," Ashley DiMarco said.
"If she's interested in it, it could be a toy, a person, anything, she just really takes her time to focus on what it is. She does take her breaks, but she's doing so much better. She is much more alert."
Avaia has spastic quadriplegic cerebral palsy. She is unable to walk, talk or communicate, and eats through a feeding tube.
Her parents heard about the treatment at a private clinic, and decided it was worth a shot, applying with physicians' letters and other documentation.
When Avaia was accepted earlier this year, Ashley, a stay-at-home mom and John, who works at the hydro tunnel in Niagara Falls, began a whirlwind two months of fundraising in an effort to raise the $30,000 required for treatment and travel.
Through those fundraisers, including barbecues, yard sales, a McDonald's event, concert and golf tournament in St. Catharines, Thorold and Welland, they met their goal.
"I want to say thank you to everybody who did help," DiMarco said again this week. "Thanks to them, this is what happened and it's already given her a better life."
The Thorold family travelled on Sept. 10, returning nine days later, and were told it would take several weeks to see any results.
Now two months later, Ashley DiMarco said she's seeing improvements.
"For everyone else, they might think it's something small, but for us it's huge," DiMarco said. "It can only get better, I think, from here. She's not going to get worse and it can only increase her chances."
Besides her ability to focus more, Avaia is now reaching out and grabbing objects, DiMarco said. She can't do it for a long period of time, but DiMarco said she was unable to hold anything in her hands before.
Avaia is also trying to sit up on her own, but hasn't mastered it yet. Once DiMarco has her up, Avaia can hold herself up for a few minutes at a time. DiMarco said if Avaia starts to lean over, she knows she has to put her hands down first and tries to stop herself from falling over.
In therapy, Avaia used to be held up around the waist and her upper half would bend over. DiMarco said she can now hold up the upper half of her body. She's been able to do it for 10 minutes at a time.
"She does get cranky after a little while because it's a lot of work for her, she's holding up all that weight on her own, but you can tell she's so proud of herself and she starts laughing and smiling," DiMarco said.
"She knows she's doing it and she's doing a great job of it."
The family is hoping to go back for more treatment, it's just a matter of money.
DiMarco said they will aim for next summer, though children can receive a second treatment in as early as six months. It's best to go when she's young and her brain is still developing for the best results, DiMarco said.
By Karena Walter / The Tribune - St. Catharines, Canada
ST. CATHARINES - Avaia looks at people's faces.
That's the biggest difference her mother has noticed since the community rallied to send the two-year-old for special bone marrow stem cell treatment.
She had trouble paying attention before. Her eyes would wander constantly. Lights attracted her attention but not her focus.
"Since we've been back, she's taking time to look at things, she's focusing a lot better, even on people's faces," Ashley DiMarco said.
"If she's interested in it, it could be a toy, a person, anything, she just really takes her time to focus on what it is. She does take her breaks, but she's doing so much better. She is much more alert."
Avaia has spastic quadriplegic cerebral palsy. She is unable to walk, talk or communicate, and eats through a feeding tube.
Her parents heard about the treatment at a private clinic, and decided it was worth a shot, applying with physicians' letters and other documentation.
When Avaia was accepted earlier this year, Ashley, a stay-at-home mom and John, who works at the hydro tunnel in Niagara Falls, began a whirlwind two months of fundraising in an effort to raise the $30,000 required for treatment and travel.
Through those fundraisers, including barbecues, yard sales, a McDonald's event, concert and golf tournament in St. Catharines, Thorold and Welland, they met their goal.
"I want to say thank you to everybody who did help," DiMarco said again this week. "Thanks to them, this is what happened and it's already given her a better life."
The Thorold family travelled on Sept. 10, returning nine days later, and were told it would take several weeks to see any results.
Now two months later, Ashley DiMarco said she's seeing improvements.
"For everyone else, they might think it's something small, but for us it's huge," DiMarco said. "It can only get better, I think, from here. She's not going to get worse and it can only increase her chances."
Besides her ability to focus more, Avaia is now reaching out and grabbing objects, DiMarco said. She can't do it for a long period of time, but DiMarco said she was unable to hold anything in her hands before.
Avaia is also trying to sit up on her own, but hasn't mastered it yet. Once DiMarco has her up, Avaia can hold herself up for a few minutes at a time. DiMarco said if Avaia starts to lean over, she knows she has to put her hands down first and tries to stop herself from falling over.
In therapy, Avaia used to be held up around the waist and her upper half would bend over. DiMarco said she can now hold up the upper half of her body. She's been able to do it for 10 minutes at a time.
"She does get cranky after a little while because it's a lot of work for her, she's holding up all that weight on her own, but you can tell she's so proud of herself and she starts laughing and smiling," DiMarco said.
"She knows she's doing it and she's doing a great job of it."
The family is hoping to go back for more treatment, it's just a matter of money.
DiMarco said they will aim for next summer, though children can receive a second treatment in as early as six months. It's best to go when she's young and her brain is still developing for the best results, DiMarco said.
Bence Puskas (10 years old), CP
Country: Hungary
My name is Bence Puskás. I am 10 years old now. I was born prematurely but healthy. However, due to an infection, I suffered from brain hypoxia (not enough oxygen) that caused a central nervous system lesion. What does this mean?
All of my limbs can move but still I can't walk unassisted. My eyes are intact but still I can't see normally. I can talk but nobody understands me. But despite these facts, I am a cheerful boy who believes that something better will follow these afflictions and pains.
I go to a special school in Kaposvár where many specialized people educate and care for me. My parents take me there every week.
I have been to Germany two times for stem-cell implantations and they helped me a lot. I've improved spectacularly.
After my first implantation, my eyesight and my immune system became much better. After my second implantation, both my cognitive skills and my ability to move improved.
Now, I can stand steady while holding something with my hands. I can also grab and hold things better with my hands. I've learned some new words as well.
Twice in the past 6 months, I survived life threatening situations that were unrelated to my treatments at the clinic. During these awful weeks, my implantations encouraged me and gave me the will to live.
These days, I still do everything I can with the help of my parents but I think a third stem-cell implantation would help me attain a self-sufficient life.
Country: Hungary
My name is Bence Puskás. I am 10 years old now. I was born prematurely but healthy. However, due to an infection, I suffered from brain hypoxia (not enough oxygen) that caused a central nervous system lesion. What does this mean?
All of my limbs can move but still I can't walk unassisted. My eyes are intact but still I can't see normally. I can talk but nobody understands me. But despite these facts, I am a cheerful boy who believes that something better will follow these afflictions and pains.
I go to a special school in Kaposvár where many specialized people educate and care for me. My parents take me there every week.
I have been to Germany two times for stem-cell implantations and they helped me a lot. I've improved spectacularly.
After my first implantation, my eyesight and my immune system became much better. After my second implantation, both my cognitive skills and my ability to move improved.
Now, I can stand steady while holding something with my hands. I can also grab and hold things better with my hands. I've learned some new words as well.
Twice in the past 6 months, I survived life threatening situations that were unrelated to my treatments at the clinic. During these awful weeks, my implantations encouraged me and gave me the will to live.
These days, I still do everything I can with the help of my parents but I think a third stem-cell implantation would help me attain a self-sufficient life.
Faaris Kutty (3 years old), CP
Country: Canada
Background and Diagnosis
Faaris was born at 25 weeks, weighing 798 g (1lb 11oz). He had a hemorrhage in his cerebellum at 4 weeks old and after spending 5 months in an NICU he was free to enter our world. We noticed that he was slow in his overall development and at one and a half Faaris was diagnosed with Cerebral Palsy. Since his departure from the NICU he was receiving therapy and when he turned two we intensified his therapy by placing him a private special needs school where he also receives daily physiotherapy, speech, occupational and music therapies. In Sept 2009, when Faaris was three we heard about the stem cell treatment, by Nov 2009, we had done our research and had already booked our date for his lumbar puncture. Before the treatment he could not say 2 word combination sentences, he could only pull up to stand and he had a lot of involuntary movements so much so that you would get vertigo just by watching him sit on a bench or on the toilet.
Stem Cell Treatment
On the day after the stem cells were implanted, to our great surprise we noticed results immediately! In the recovery room Faaris had to lie down for 3 hours before leaving, so to pass the time we were singing his favorite song, Happy Birthday. Before, Faaris could only say "happy bir" and he could not ever say the end of that phrase, however, when we started singing it, that day, he just came right out and said in loud voice "Happy birthday to YOU!" He had never been able to say that nor could he put 4 words together!!! 2 days later he could sing "Twinkle Little Star" in its entirety!
We have a facebook page dedicated to Faaris's journey and the subsequent progress that he has made. Below are our entries that we have made on the page with regards to his progress:
So it's official! The stem cells are making a difference. It has been 2 weeks since the implantation and Faaris's occupational therapist has reported to us that he can now sit on a bench, toilet and chair without the involuntary movements!!! He is singing more songs and saying more sentences. He can also stand for a few seconds without support! HUGE PROGRESS in such a short time!
One Month after the Procedure
Faaris has made some real gains in this last month. He is continuously saying 3-4 word sentences and making up his own too instead of repeating what we are saying. He is articulating verbally what he is thinking without throwing temper tantrums. He is pronouncing words better now. He is able to feed himself better with a fork. The best part is also with his cognition - He is standing straight and putting weight on his feet. For 3 -15 seconds can stand with no support which is a big steps as his knees used to buckle and he would not be able to stand at all. I was strapping Faaris in his car seat, out of the blue, he grabs my arm and says "mommy...you're a good mommy"!!!! He has hardly called me by name let alone said something like this to me! How I have longed for this day and it has come!
Two Months after the Procedure
So now it has been 2 months and Faaris is continuing to make progress. He is saying more word and getting better pronunciation. He is also pulling up to stand on a lot of different things as before it was only very specific items. He has also started to cruise which is something new for him. Cognitively he is able to grasp more social etiquette and is becoming aware of his will power which is hard on us but is a great milestone for him as he is not passive and knows what he wants and is communicating it effectively.
Four Months after the Procedure
Faaris is able to ride a bicycle which has some support for his trunk but he is able to co-ordinate the pedals and push them to move and he actually can ride around the neighborhood now!!!!!!!!! He is saying more sentences and is getting better and better in his communication skills. His retention for learning has really improved. For example I taught him the word tissue yesterday and today when he wanted to wipe his nose he said while pointing to the tissue box "I want tissue please." The rate in which he is learning had really increased.
You can also visit the Facebook page at "Stem Cell Therapy for Faaris in Germany."
Conclusion
We are so happy that stem cell therapy exists and has given our son a better quality of life!
Country: Canada
Background and Diagnosis
Faaris was born at 25 weeks, weighing 798 g (1lb 11oz). He had a hemorrhage in his cerebellum at 4 weeks old and after spending 5 months in an NICU he was free to enter our world. We noticed that he was slow in his overall development and at one and a half Faaris was diagnosed with Cerebral Palsy. Since his departure from the NICU he was receiving therapy and when he turned two we intensified his therapy by placing him a private special needs school where he also receives daily physiotherapy, speech, occupational and music therapies. In Sept 2009, when Faaris was three we heard about the stem cell treatment, by Nov 2009, we had done our research and had already booked our date for his lumbar puncture. Before the treatment he could not say 2 word combination sentences, he could only pull up to stand and he had a lot of involuntary movements so much so that you would get vertigo just by watching him sit on a bench or on the toilet.
Stem Cell Treatment
On the day after the stem cells were implanted, to our great surprise we noticed results immediately! In the recovery room Faaris had to lie down for 3 hours before leaving, so to pass the time we were singing his favorite song, Happy Birthday. Before, Faaris could only say "happy bir" and he could not ever say the end of that phrase, however, when we started singing it, that day, he just came right out and said in loud voice "Happy birthday to YOU!" He had never been able to say that nor could he put 4 words together!!! 2 days later he could sing "Twinkle Little Star" in its entirety!
We have a facebook page dedicated to Faaris's journey and the subsequent progress that he has made. Below are our entries that we have made on the page with regards to his progress:
So it's official! The stem cells are making a difference. It has been 2 weeks since the implantation and Faaris's occupational therapist has reported to us that he can now sit on a bench, toilet and chair without the involuntary movements!!! He is singing more songs and saying more sentences. He can also stand for a few seconds without support! HUGE PROGRESS in such a short time!
One Month after the Procedure
Faaris has made some real gains in this last month. He is continuously saying 3-4 word sentences and making up his own too instead of repeating what we are saying. He is articulating verbally what he is thinking without throwing temper tantrums. He is pronouncing words better now. He is able to feed himself better with a fork. The best part is also with his cognition - He is standing straight and putting weight on his feet. For 3 -15 seconds can stand with no support which is a big steps as his knees used to buckle and he would not be able to stand at all. I was strapping Faaris in his car seat, out of the blue, he grabs my arm and says "mommy...you're a good mommy"!!!! He has hardly called me by name let alone said something like this to me! How I have longed for this day and it has come!
Two Months after the Procedure
So now it has been 2 months and Faaris is continuing to make progress. He is saying more word and getting better pronunciation. He is also pulling up to stand on a lot of different things as before it was only very specific items. He has also started to cruise which is something new for him. Cognitively he is able to grasp more social etiquette and is becoming aware of his will power which is hard on us but is a great milestone for him as he is not passive and knows what he wants and is communicating it effectively.
Four Months after the Procedure
Faaris is able to ride a bicycle which has some support for his trunk but he is able to co-ordinate the pedals and push them to move and he actually can ride around the neighborhood now!!!!!!!!! He is saying more sentences and is getting better and better in his communication skills. His retention for learning has really improved. For example I taught him the word tissue yesterday and today when he wanted to wipe his nose he said while pointing to the tissue box "I want tissue please." The rate in which he is learning had really increased.
You can also visit the Facebook page at "Stem Cell Therapy for Faaris in Germany."
Conclusion
We are so happy that stem cell therapy exists and has given our son a better quality of life!
Harrison Spears and Dominic King (both 11 years old), CP
Small miracles: How life has changed for Dom and H
Written by: Jeffrey Wolf and Kim Christiansen
DENVER - March 10, 2010 - What if? That's a question asked every day by people of all ages and all backgrounds. More than a year ago, two families from Denver decided to do something, to take a chance and find the answer to the big "What if" in their lives.
Their quest began in late 2008 when Harrison Spiers told his parents he only wanted one thing for Christmas: a stem cell transplant.
Harrison, who has cerebral palsy, knew his parents had been doing some research online about these type of treatments.
Harrison's best friend is Dominic King, (known to friends as Dom and H) and he, too, has cerebral palsy. The boys met in preschool and have been best friends ever since. Their moms say they are almost like brothers. They compete against one another in math skills, but stand up for each other and help each other communicate whenever necessary.
Both boys are funny, charming and very smart. Becky Buckbee is their speech pathologist at Cottonwood Creek Elementary School.
"They are why I do what I do. I've seen them grow from little boys into these really great students and they have a lot to say. It's just so hard for them to get it out," she said.
Stem cell transplants are showing promise when it comes to helping people gain more movement and speech. However, this type of treatment is not being done in the United States.
During the procedure, bone marrow is taken from a patient's hip bone to find stem cells. In a laboratory, the stem cells are chemically treated and turned into brain cells, also known as neurons. Doctors then inject the cells back into a patient's lower spinal cord. From there, the neurons find their way to the diseased area and hopefully began to repair the site of damage.
A massive fundraising effort began in the school and community to help Harrison and Dominic make the trip and pay for the procedure, which is not covered by insurance.
It has been more than seven months since their trip to Germany. Their mothers call it monumental; they even use the word miracle.
Alicia Spiers, Harrison's mom, said, "Life is easier for him now."
Just about 24 hours after the surgery, the Spiers noticed Harrison's hands were open, and they used to be clinched all of the time. He is now able to feed himself much better and use his communication computer with greater speed. It used to take him about 20 minutes to compose a sentence, now it is about three to five minutes.
Harrison is much stronger too. He used to roll around on the floor and watch television on his back. Now, he can roll over and hold himself up on his arms and watch a half-hour show.
As for Dominic, the biggest change is one that many did not see before. Dom is an avid reader, who goes to the library at least three times a week. He used to check out only audio books because his eyes would not focus together allowing him to read. Now, he can see the words and read them.
"That's the big wow. This is amazing. It'll open up so many doors for him, it'll be huge and he can hopefully start showing people: 'This is really what I know,'" Christina King, Dom's mother, said.
Like Harrison, Dom has much more strength and is finally able to sit in his wheelchair without the shoulder straps that held his body back and prevented him from falling forward.
King does not believe any of this would be happening without the stem cells.
Both families have no idea if there will be more progress or any negative consequences related to the transplant. Still, they have no regrets. Rather, they have hope that clinical trials in the United States may lead to new research involving adult stem cells.
When they look at their sons, they see tremendous potential. They also see more independence.
Spiers added, "He doesn't want to live with me his whole life. He wants to go to college, to get an education and a job."
You can learn about Harrison's story (and Dom's) at http://harrisonsstory.blogspot.com/.
(KUSA-TV © 2010 Multimedia Holdings Corporation)
Small miracles: How life has changed for Dom and H
Written by: Jeffrey Wolf and Kim Christiansen
DENVER - March 10, 2010 - What if? That's a question asked every day by people of all ages and all backgrounds. More than a year ago, two families from Denver decided to do something, to take a chance and find the answer to the big "What if" in their lives.
Their quest began in late 2008 when Harrison Spiers told his parents he only wanted one thing for Christmas: a stem cell transplant.
Harrison, who has cerebral palsy, knew his parents had been doing some research online about these type of treatments.
Harrison's best friend is Dominic King, (known to friends as Dom and H) and he, too, has cerebral palsy. The boys met in preschool and have been best friends ever since. Their moms say they are almost like brothers. They compete against one another in math skills, but stand up for each other and help each other communicate whenever necessary.
Both boys are funny, charming and very smart. Becky Buckbee is their speech pathologist at Cottonwood Creek Elementary School.
"They are why I do what I do. I've seen them grow from little boys into these really great students and they have a lot to say. It's just so hard for them to get it out," she said.
Stem cell transplants are showing promise when it comes to helping people gain more movement and speech. However, this type of treatment is not being done in the United States.
During the procedure, bone marrow is taken from a patient's hip bone to find stem cells. In a laboratory, the stem cells are chemically treated and turned into brain cells, also known as neurons. Doctors then inject the cells back into a patient's lower spinal cord. From there, the neurons find their way to the diseased area and hopefully began to repair the site of damage.
A massive fundraising effort began in the school and community to help Harrison and Dominic make the trip and pay for the procedure, which is not covered by insurance.
It has been more than seven months since their trip to Germany. Their mothers call it monumental; they even use the word miracle.
Alicia Spiers, Harrison's mom, said, "Life is easier for him now."
Just about 24 hours after the surgery, the Spiers noticed Harrison's hands were open, and they used to be clinched all of the time. He is now able to feed himself much better and use his communication computer with greater speed. It used to take him about 20 minutes to compose a sentence, now it is about three to five minutes.
Harrison is much stronger too. He used to roll around on the floor and watch television on his back. Now, he can roll over and hold himself up on his arms and watch a half-hour show.
As for Dominic, the biggest change is one that many did not see before. Dom is an avid reader, who goes to the library at least three times a week. He used to check out only audio books because his eyes would not focus together allowing him to read. Now, he can see the words and read them.
"That's the big wow. This is amazing. It'll open up so many doors for him, it'll be huge and he can hopefully start showing people: 'This is really what I know,'" Christina King, Dom's mother, said.
Like Harrison, Dom has much more strength and is finally able to sit in his wheelchair without the shoulder straps that held his body back and prevented him from falling forward.
King does not believe any of this would be happening without the stem cells.
Both families have no idea if there will be more progress or any negative consequences related to the transplant. Still, they have no regrets. Rather, they have hope that clinical trials in the United States may lead to new research involving adult stem cells.
When they look at their sons, they see tremendous potential. They also see more independence.
Spiers added, "He doesn't want to live with me his whole life. He wants to go to college, to get an education and a job."
You can learn about Harrison's story (and Dom's) at http://harrisonsstory.blogspot.com/.
(KUSA-TV © 2010 Multimedia Holdings Corporation)
Iker Chueca (7 years old), CP
Country of Residence: Spain
Background
Iker Chueca is a 7 year-old boy who suffers from cerebral palsy. From early on, he was not able to walk or use his arms and hands properly. He has always had very limited cognitive skills, especially verbal and writing skills, although he's always been a very communicative and sympathetic child.
We all know that this condition is very hard for children and that it is very sad for their parents to see them in such a situation. There are not many therapies available. Those which are focus on the temporary alleviation of symptoms without addressing the brain damage that causes them.
Iker was undergoing Botox therapy to reduce his severe spasticity and help him regain some flexibility and motor skills. But Botox therapy did not meet our expectations. Although it can reduce spasticity, Botox also reduces muscle mobility which from our point of view, was a negative consequence that we were not prepared to live with.
But parents will always try to do their best for their children and that was why Iker underwent stem cell therapy. Getting in touch with other parents through Internet, we learned about the clinic and decided to contact them and send them all Iker's medical information and MRI. In principle, we were just interested to find out about the possibility of stem cell therapy for the time being. Traveling abroad with very poor knowledge of English can be very difficult; especially if any problems arise. We also felt very responsible for our son's health and we would never forgive ourselves if something went wrong.
We were very pleased to be assisted in our native language throughout the entire application/evaluation process. Email and telephone calls from very qualified personnel gave us a sense of overall professionalism. We decided to go and we only needed an approval from the doctors. They reviewed our son's case in detail and kept us informed about their deliberations and our treatment possibilities. Fortunately, they approved Iker for intrathecal stem cell implantation which is a very easy and successful procedure that does not involve serious risks.
Stem Cell Treatment on August 13, 2009
The treatment was planned for August 13, 2009. Two days prior to treatment, Iker consulted with the neuro-pediatrician and physiotherapist to design an exercise program to maximize the potential of his treatment. On that day, they also performed the bone marrow collection which took about 1 hour.
On treatment day, we were a bit nervous but everything went perfectly and the stem cells were successfully implanted into the cerebrospinal fluid (CSF) via lumbar puncture. The CSF transports the stem cells into the brain. In the following days, he experienced some side effects such as fatigue, fever and headache but he was totally recovered in 4 days. Iker is a very positive and friendly child and he remained happy during our entire stay in Germany. We will never forget it.
Results
Soon after treatment, we noticed that Iker had a slight release in his spasticity, improving his performance in the swimming pool. The clinics personnel told us that it could be a consequence of the treatment but we should wait a little longer to be sure and to see more results.
That indeed, was the fact. A few weeks later, all aspects of Iker's condition improved. His mobility improved significantly and now he is able to hold things with his hands. His hand and finger coordination has improved to the point where he can actually write using a computer. His drawings look much better and he can write using a pen. Regarding his lower limbs, he has better balance and less spasticity. He can swim alone and even jump sometimes. All this has made him more independent. Now he is able to do different things by himself that he was not able to do before such us washing himself, eating, getting dressed, getting up and down on the sofa and in and out of bed.
There have been cognitive improvements as well. His pronunciation and speech are better now. He can compose full sentences with 5-6 words. He can count upwards from 1 to 10 and downwards from 6 to 0. His memory has improved which allows him to do easy calculations and mathematic problems, participate in interactive games, and remember things from one day to the next. Now, we can have a conversation with him and is able to understand and follow along.
All of the teachers at Iker's school have noticed a big change but they do not know he has undergone stem cell therapy. Before the stem cells treatment, he was very frustrated at school but now he enjoys learning. We are sure there is more to come and we are glad and thankful to have found the clinic.
Country of Residence: Spain
Background
Iker Chueca is a 7 year-old boy who suffers from cerebral palsy. From early on, he was not able to walk or use his arms and hands properly. He has always had very limited cognitive skills, especially verbal and writing skills, although he's always been a very communicative and sympathetic child.
We all know that this condition is very hard for children and that it is very sad for their parents to see them in such a situation. There are not many therapies available. Those which are focus on the temporary alleviation of symptoms without addressing the brain damage that causes them.
Iker was undergoing Botox therapy to reduce his severe spasticity and help him regain some flexibility and motor skills. But Botox therapy did not meet our expectations. Although it can reduce spasticity, Botox also reduces muscle mobility which from our point of view, was a negative consequence that we were not prepared to live with.
But parents will always try to do their best for their children and that was why Iker underwent stem cell therapy. Getting in touch with other parents through Internet, we learned about the clinic and decided to contact them and send them all Iker's medical information and MRI. In principle, we were just interested to find out about the possibility of stem cell therapy for the time being. Traveling abroad with very poor knowledge of English can be very difficult; especially if any problems arise. We also felt very responsible for our son's health and we would never forgive ourselves if something went wrong.
We were very pleased to be assisted in our native language throughout the entire application/evaluation process. Email and telephone calls from very qualified personnel gave us a sense of overall professionalism. We decided to go and we only needed an approval from the doctors. They reviewed our son's case in detail and kept us informed about their deliberations and our treatment possibilities. Fortunately, they approved Iker for intrathecal stem cell implantation which is a very easy and successful procedure that does not involve serious risks.
Stem Cell Treatment on August 13, 2009
The treatment was planned for August 13, 2009. Two days prior to treatment, Iker consulted with the neuro-pediatrician and physiotherapist to design an exercise program to maximize the potential of his treatment. On that day, they also performed the bone marrow collection which took about 1 hour.
On treatment day, we were a bit nervous but everything went perfectly and the stem cells were successfully implanted into the cerebrospinal fluid (CSF) via lumbar puncture. The CSF transports the stem cells into the brain. In the following days, he experienced some side effects such as fatigue, fever and headache but he was totally recovered in 4 days. Iker is a very positive and friendly child and he remained happy during our entire stay in Germany. We will never forget it.
Results
Soon after treatment, we noticed that Iker had a slight release in his spasticity, improving his performance in the swimming pool. The clinics personnel told us that it could be a consequence of the treatment but we should wait a little longer to be sure and to see more results.
That indeed, was the fact. A few weeks later, all aspects of Iker's condition improved. His mobility improved significantly and now he is able to hold things with his hands. His hand and finger coordination has improved to the point where he can actually write using a computer. His drawings look much better and he can write using a pen. Regarding his lower limbs, he has better balance and less spasticity. He can swim alone and even jump sometimes. All this has made him more independent. Now he is able to do different things by himself that he was not able to do before such us washing himself, eating, getting dressed, getting up and down on the sofa and in and out of bed.
There have been cognitive improvements as well. His pronunciation and speech are better now. He can compose full sentences with 5-6 words. He can count upwards from 1 to 10 and downwards from 6 to 0. His memory has improved which allows him to do easy calculations and mathematic problems, participate in interactive games, and remember things from one day to the next. Now, we can have a conversation with him and is able to understand and follow along.
All of the teachers at Iker's school have noticed a big change but they do not know he has undergone stem cell therapy. Before the stem cells treatment, he was very frustrated at school but now he enjoys learning. We are sure there is more to come and we are glad and thankful to have found the clinic.
Jannat Abu Kaf (5 years old), CP
How it happened
During birth, Jannat and her twin brother went through some complications that lead to lack of oxygen in the brain. At the age of 28 weeks, she was diagnosed with cerebral palsy.
The Consequences
Jannat was in very poor condition. She was not able to sit alone. She could not stand and was not even able to crawl. Jannat also had problems with moving her hands. She could not clap them together or hold anything in them, not even food; so she was never able to eat alone. She also had difficulties drinking, especially through a straw or even from her milk bottle. She also experienced speech problems; speaking infrequently and when she did, her words and sentences were not clear so it was hard to understand what she was trying to say.
Treatment and Recovery
In 2008, we heard about stem cell therapy, so we proceeded to contact the center. In December 2008 had the treatment done for Jannat. Two months later, we started noticing that her situation was improving. It was slow in the beginning but we could notice that she was getting better.
Now, one year after her treatment, Jannat can speak clearly and fluently. She can also sit unassisted for around 4-6 minutes. She is even able to stand with the aid of a support.
Jannat is now eating by herself, because the function of her arms and hands are almost normal now. She is also able to drink from her milk bottle, or drink using a straw.
Today, we are to get a second treatment for our daughter because what we observed after the first treatment, gave us the hope for even greater improvement.
How it happened
During birth, Jannat and her twin brother went through some complications that lead to lack of oxygen in the brain. At the age of 28 weeks, she was diagnosed with cerebral palsy.
The Consequences
Jannat was in very poor condition. She was not able to sit alone. She could not stand and was not even able to crawl. Jannat also had problems with moving her hands. She could not clap them together or hold anything in them, not even food; so she was never able to eat alone. She also had difficulties drinking, especially through a straw or even from her milk bottle. She also experienced speech problems; speaking infrequently and when she did, her words and sentences were not clear so it was hard to understand what she was trying to say.
Treatment and Recovery
In 2008, we heard about stem cell therapy, so we proceeded to contact the center. In December 2008 had the treatment done for Jannat. Two months later, we started noticing that her situation was improving. It was slow in the beginning but we could notice that she was getting better.
Now, one year after her treatment, Jannat can speak clearly and fluently. She can also sit unassisted for around 4-6 minutes. She is even able to stand with the aid of a support.
Jannat is now eating by herself, because the function of her arms and hands are almost normal now. She is also able to drink from her milk bottle, or drink using a straw.
Today, we are to get a second treatment for our daughter because what we observed after the first treatment, gave us the hope for even greater improvement.
Sophia Chang (3 years old), CP
Background and Diagnosis
Sophia is a 3.5 year old girl with a diagnosis of Ataxic Cerebral Palsy. She was induced at 39 weeks due to a low fetal heart rate. We do not know what caused the low fetal heart rate and we may never know. She appeared fine at birth but it became evident over the next few months that there was something wrong.
She has microcephaly (small head circumference), trigonecephaly (her frontal lobe is smaller in proportion to the rest of her brain resulting in the metopoc sutures fusing prematurely), hypotonia (low muscle tone), apraxia, dysarthia, and global developmental delays. She has been receiving PT and OT services from about 6 months and speech from 15 months of age. She understands a great deal but her biggest difficulty is motor planning and execution and having her body do what she wants it to do.
When Sophia was about 18 months old, we looked into stem cell therapy and found a doctor at Duke University who was going to perform a procedure where she would inject her own umbilical stem cells into her spinal fluid. Turned out the blood was contaminated so we looked for another way to have a safe procedure using her own stem cells.
We found out about your clinic and were excited to learn that we would be able to safely remove stem cells from her own bone marrow and reinject into her spinal fluid. We felt reassured knowing that it was her own blood and that her body would not reject it, but we were of course worried about whether her little body could handle the procedure and didn't know what to expect. We booked the procedure for March 2007 when she was 23 months.
Sophia prior to the procedure was able to take independent steps but she did not have the protective reaction when she lost balance. She had to wear a helmet because she would freefall backwards on her head. She also had a very wide gait, her feet were pronated (she had to wear orthotics for this) and her arms were very high. She also had an eye that turned in that required a patch several times a day. She was not able to chew and her main source of nutrition was milk-the only foods she did eat was cheerios and baby foods that dissolved easily in the mouth. She did not have any words and had very limited sounds (m, b and vowels). She understood a lot and was always a very social and happy child.
The Procedure
The procedure was very simple. Sophia went in for the first part, handled the anesthesia just fine and the procedure itself of extracting the bone marrow took no more than 30 minutes. She woke up within an hour and she was just fine. We went back to the hotel and she did not exhibit any adverse effects or pain. After a few days, we went back to the center and had the second part of the treatment, they put her under and injected the stem cells into her spinal fluid which also took no more than 15 minutes or so. She woke up again within an hour and we went back to hotel. She was totally fine and back to her normal happy self by that evening.
The Results
As far as results, it is hard to say exactly what is a direct result of the procedure and what may be purely developmental because she was so young when she had the procedure. One thing for sure was that the amount and pace at which she progressed following the procedure was much more and faster than prior to the procedure. Things we noticed within a few weeks was that she developed a protective reaction when falling (we never needed to put the helmet back on once we got back home), she was able to chew foods and had more of an interest in foods (fries, peas, pretzels) within a week of the procedure. She seemed to just be more aware of everything and she played with toys more purposefully.
Currently, Sophia is running (at a slower pace and not as smooth as other children), walking up stairs by holding a handrail, jumping (she can get about 3-4" off the ground, climbing on furniture, her movements much more fluid, eating pretty much everything we give her (meats, cashews, breads, chicken nuggets, pizza), drinking from an open cup with and without a straw, has about 100 words (not clear but we can understand), 10-15 words that a stranger can understand. Her head circumference has also grown in percentage-she used to be well below the 0% but her head circumference is now between the 5-10%. Her eye no longer turns in which no longer requires to be patched and she no longer requires orthotics. She does wear inserts in her shoe but now she is able to wear a regular shoe. When our friends/family see Sophia they are amazed at how much she has progressed. They truly believe that the stem cells helped. She still has a long ways to go but she is doing so much more than any of us had ever anticipated at this point. In addition, each week her OT mentions how impressed with how Sophia acquires new skills so quickly and keeps advancing in her motor skills. She is currently enrolled in a Pre-school Aphasia (language-based) program 18 hours/week, and also attends PT, OT, and speech therapy.
Overall Impression and Second Treatment
Our experience with was a great one and I do truly believe that the procedure has helped her make significant progress. I know that it is an expensive procedure and traveling abroad is not easy, so I do not want to encourage or discourage anyone one way or another. I think you just need to go with your gut instinct. We went into it not expecting any miracles but just any little bit of progress as long as we felt that the risks did not outweigh the potential benefits. We were very pleased with the results and decided to make a second trip tolast month in November 2009. She did have a bit of nausea and vomiting after the stem cell injection and she seemed to be in some pain at the injection site but all of that was resolved within 48 hours. It is too early to say what progress she has made since it has only been a few weeks and she is receiving therapy as well. But already we have noticed that her drooling has almost stopped completely and that she has acquired many new sounds and words following our second trip. In addition her words sound much clearer. She is much more motivated to use her words and will repeat many words that she hears, I think she even surprises herself when she realizes she can produce a sound she wasn't able to just a few weeks ago. She is even beginning to combine 2 words such as "Hi dad" or "Mom eat" that she wasn't able to do before the procedure. We have also noticed that her fine motor skills have become much more controlled particularly when drawing-she is trying hard to draw with more precision.
We hope that this information is helpful for anyone considering the procedure for themselves or a loved one. We can only share our personal experience but one common goal we share is that we all want the best for our loved ones and will go to whatever lengths to help improve their quality of life. We wish everyone all the best!
Background and Diagnosis
Sophia is a 3.5 year old girl with a diagnosis of Ataxic Cerebral Palsy. She was induced at 39 weeks due to a low fetal heart rate. We do not know what caused the low fetal heart rate and we may never know. She appeared fine at birth but it became evident over the next few months that there was something wrong.
She has microcephaly (small head circumference), trigonecephaly (her frontal lobe is smaller in proportion to the rest of her brain resulting in the metopoc sutures fusing prematurely), hypotonia (low muscle tone), apraxia, dysarthia, and global developmental delays. She has been receiving PT and OT services from about 6 months and speech from 15 months of age. She understands a great deal but her biggest difficulty is motor planning and execution and having her body do what she wants it to do.
When Sophia was about 18 months old, we looked into stem cell therapy and found a doctor at Duke University who was going to perform a procedure where she would inject her own umbilical stem cells into her spinal fluid. Turned out the blood was contaminated so we looked for another way to have a safe procedure using her own stem cells.
We found out about your clinic and were excited to learn that we would be able to safely remove stem cells from her own bone marrow and reinject into her spinal fluid. We felt reassured knowing that it was her own blood and that her body would not reject it, but we were of course worried about whether her little body could handle the procedure and didn't know what to expect. We booked the procedure for March 2007 when she was 23 months.
Sophia prior to the procedure was able to take independent steps but she did not have the protective reaction when she lost balance. She had to wear a helmet because she would freefall backwards on her head. She also had a very wide gait, her feet were pronated (she had to wear orthotics for this) and her arms were very high. She also had an eye that turned in that required a patch several times a day. She was not able to chew and her main source of nutrition was milk-the only foods she did eat was cheerios and baby foods that dissolved easily in the mouth. She did not have any words and had very limited sounds (m, b and vowels). She understood a lot and was always a very social and happy child.
The Procedure
The procedure was very simple. Sophia went in for the first part, handled the anesthesia just fine and the procedure itself of extracting the bone marrow took no more than 30 minutes. She woke up within an hour and she was just fine. We went back to the hotel and she did not exhibit any adverse effects or pain. After a few days, we went back to the center and had the second part of the treatment, they put her under and injected the stem cells into her spinal fluid which also took no more than 15 minutes or so. She woke up again within an hour and we went back to hotel. She was totally fine and back to her normal happy self by that evening.
The Results
As far as results, it is hard to say exactly what is a direct result of the procedure and what may be purely developmental because she was so young when she had the procedure. One thing for sure was that the amount and pace at which she progressed following the procedure was much more and faster than prior to the procedure. Things we noticed within a few weeks was that she developed a protective reaction when falling (we never needed to put the helmet back on once we got back home), she was able to chew foods and had more of an interest in foods (fries, peas, pretzels) within a week of the procedure. She seemed to just be more aware of everything and she played with toys more purposefully.
Currently, Sophia is running (at a slower pace and not as smooth as other children), walking up stairs by holding a handrail, jumping (she can get about 3-4" off the ground, climbing on furniture, her movements much more fluid, eating pretty much everything we give her (meats, cashews, breads, chicken nuggets, pizza), drinking from an open cup with and without a straw, has about 100 words (not clear but we can understand), 10-15 words that a stranger can understand. Her head circumference has also grown in percentage-she used to be well below the 0% but her head circumference is now between the 5-10%. Her eye no longer turns in which no longer requires to be patched and she no longer requires orthotics. She does wear inserts in her shoe but now she is able to wear a regular shoe. When our friends/family see Sophia they are amazed at how much she has progressed. They truly believe that the stem cells helped. She still has a long ways to go but she is doing so much more than any of us had ever anticipated at this point. In addition, each week her OT mentions how impressed with how Sophia acquires new skills so quickly and keeps advancing in her motor skills. She is currently enrolled in a Pre-school Aphasia (language-based) program 18 hours/week, and also attends PT, OT, and speech therapy.
Overall Impression and Second Treatment
Our experience with was a great one and I do truly believe that the procedure has helped her make significant progress. I know that it is an expensive procedure and traveling abroad is not easy, so I do not want to encourage or discourage anyone one way or another. I think you just need to go with your gut instinct. We went into it not expecting any miracles but just any little bit of progress as long as we felt that the risks did not outweigh the potential benefits. We were very pleased with the results and decided to make a second trip tolast month in November 2009. She did have a bit of nausea and vomiting after the stem cell injection and she seemed to be in some pain at the injection site but all of that was resolved within 48 hours. It is too early to say what progress she has made since it has only been a few weeks and she is receiving therapy as well. But already we have noticed that her drooling has almost stopped completely and that she has acquired many new sounds and words following our second trip. In addition her words sound much clearer. She is much more motivated to use her words and will repeat many words that she hears, I think she even surprises herself when she realizes she can produce a sound she wasn't able to just a few weeks ago. She is even beginning to combine 2 words such as "Hi dad" or "Mom eat" that she wasn't able to do before the procedure. We have also noticed that her fine motor skills have become much more controlled particularly when drawing-she is trying hard to draw with more precision.
We hope that this information is helpful for anyone considering the procedure for themselves or a loved one. We can only share our personal experience but one common goal we share is that we all want the best for our loved ones and will go to whatever lengths to help improve their quality of life. We wish everyone all the best!
Christopher Giacobbe Wallet (13 years old), CP
How it happened (related by Christopher's mother Ritu)
My 13-year-old son Christopher was born with Cerebral Palsy. He is comprehensively delayed and his development is that of an 8-year-old. Despite the strong physical restrictions, he is bound to a wheelchair and he is quite spastic, Christopher is in the 8th grade at a regular school. He uses a special keyboard on his computer and is supported by a full time assistant.
Christopher has a twin sister, Kristina. He is always trying to keep up with her, but his condition often makes it hard.
I have been researching stem cell therapy for nearly seven years now and have watched the progress and general discussion about such treatments closely. I was hoping for a chance for my son to receive one.
Treatment with stem cells in August 2008
In August of 2008 Christopher, Kristina and I travelled to Cologne, where an excellent team surrounding the neurosurgeon, who was very understanding and sensitive of Christopher's condition, welcomed us.
The bone marrow was extracted from Christopher's hip bone under general anaesthesia and the stem cells were reimplanted by lumbar puncture three days later. Christopher has no recollection of the treatment and even asked, "Why did we visit the clinic at all", but he remembers Cologne vividly, especially the Cathedral, which he now calls "The Christopher Castle".
Results
While still in Germany, approximately 2-3 days after the stem cells were transplanted, we started noticing changes in Christopher's speech pattern. Until then he only spoke in fragmented sentences but now he has begun talking in complete sentences. This improvement came much quicker than I thought it would. After our return home, he could suddenly hold himself up with no assistance for about 20 to 35 seconds. Prior to the therapy with stem cells the maximum was about 2 seconds. Every week since then we notice further improvements, Christopher's fine motor skills have developed, his aim has improved, and he can hold his fork and eat without help. He is also able to understand things much better and asks detailed questions.
Outlook
We are looking forward to Christopher's next steps; the improvements so far have been quite remarkable.
How it happened (related by Christopher's mother Ritu)
My 13-year-old son Christopher was born with Cerebral Palsy. He is comprehensively delayed and his development is that of an 8-year-old. Despite the strong physical restrictions, he is bound to a wheelchair and he is quite spastic, Christopher is in the 8th grade at a regular school. He uses a special keyboard on his computer and is supported by a full time assistant.
Christopher has a twin sister, Kristina. He is always trying to keep up with her, but his condition often makes it hard.
I have been researching stem cell therapy for nearly seven years now and have watched the progress and general discussion about such treatments closely. I was hoping for a chance for my son to receive one.
Treatment with stem cells in August 2008
In August of 2008 Christopher, Kristina and I travelled to Cologne, where an excellent team surrounding the neurosurgeon, who was very understanding and sensitive of Christopher's condition, welcomed us.
The bone marrow was extracted from Christopher's hip bone under general anaesthesia and the stem cells were reimplanted by lumbar puncture three days later. Christopher has no recollection of the treatment and even asked, "Why did we visit the clinic at all", but he remembers Cologne vividly, especially the Cathedral, which he now calls "The Christopher Castle".
Results
While still in Germany, approximately 2-3 days after the stem cells were transplanted, we started noticing changes in Christopher's speech pattern. Until then he only spoke in fragmented sentences but now he has begun talking in complete sentences. This improvement came much quicker than I thought it would. After our return home, he could suddenly hold himself up with no assistance for about 20 to 35 seconds. Prior to the therapy with stem cells the maximum was about 2 seconds. Every week since then we notice further improvements, Christopher's fine motor skills have developed, his aim has improved, and he can hold his fork and eat without help. He is also able to understand things much better and asks detailed questions.
Outlook
We are looking forward to Christopher's next steps; the improvements so far have been quite remarkable.
Hiba Imad Jaafar (6 years old), CP
Background and Diagnosis
Hiba is a 6 year-old female who was born 3 months prematurely.
Hiba recovered after 2.5 months in NICU ( nursery intensive care unit). At the age of 8 months, the family physician noticed that she was unable to control her lower extremities. This was confirmed by a pediatric neuro-specialist as a case of cerebral palsy. He recommended physiotherapy.
Hiba didn't start physiotherapy till the age of 3 years. Still, throughout this whole period, she was being seen regularly by the pediatric neuro-specialist.
At the age of 4, Hiba underwent Botox-injections in her feet to control her lower extremities which were highly spastic. This procedure was ineffective.
Hiba had travelled with her parents to the clinic on 17/11/2008. She underwent her stem cell transplantation procedure, hoping to retain normal upper-body movement and to gain control over her lower extremities.
Results
A year and a half after the procedure, the following outcomes have been reported by her family:
Hands (upper extremities) - more control, especially since they used to be considered "limp"
Legs (lower extremities) - no significant progression - note that with respect to sitting, she has developed more balance
Speech - improved; correct and clear articulation of letters, complete sentence composition
Mental - already considered normal, getting better intellectually, especially since she was enrolled last year in a school that specializes in such cases
Note - Upon her return to Beirut, Hiba underwent extensive physiotherapy on her lower extremities for one month.
Background and Diagnosis
Hiba is a 6 year-old female who was born 3 months prematurely.
Hiba recovered after 2.5 months in NICU ( nursery intensive care unit). At the age of 8 months, the family physician noticed that she was unable to control her lower extremities. This was confirmed by a pediatric neuro-specialist as a case of cerebral palsy. He recommended physiotherapy.
Hiba didn't start physiotherapy till the age of 3 years. Still, throughout this whole period, she was being seen regularly by the pediatric neuro-specialist.
At the age of 4, Hiba underwent Botox-injections in her feet to control her lower extremities which were highly spastic. This procedure was ineffective.
Hiba had travelled with her parents to the clinic on 17/11/2008. She underwent her stem cell transplantation procedure, hoping to retain normal upper-body movement and to gain control over her lower extremities.
Results
A year and a half after the procedure, the following outcomes have been reported by her family:
Hands (upper extremities) - more control, especially since they used to be considered "limp"
Legs (lower extremities) - no significant progression - note that with respect to sitting, she has developed more balance
Speech - improved; correct and clear articulation of letters, complete sentence composition
Mental - already considered normal, getting better intellectually, especially since she was enrolled last year in a school that specializes in such cases
Note - Upon her return to Beirut, Hiba underwent extensive physiotherapy on her lower extremities for one month.
Ethan Radtke (5 years old), CP
Fox News Story from Ethan's July 20th Homecoming
By: Mike Nowatzki, INFORUM, (www.inforum.com),"North Dakota's #1 web site"
Ethan Radtke lies on his back on the living room floor and proudly crosses his legs. With a little prompting, he spreads them apart and pulls his knees up toward his chest.
"Oh, that's so awesome. Gimme five!" says Tressica Hasbargen, his occupational therapist.
The exercises may not seem that impressive to a stranger. But for this 5-year-old West Fargo boy, every new leg movement is a milestone.
Since receiving stem cell treatment for cerebral palsy two months ago in Germany, Ethan's stiff, spastic leg muscles have loosened significantly, allowing him to bend and flex his legs in ways he couldn't before.
His mother, Lisa Radtke, watches with a smile as Ethan sits in a kitchen chair, his legs apart and dangling below him, and tosses a ball into a bucket.
"For him to sit lik that before would have never happened," she says. "His legs were clasped together."
Hasbargen's eyes light up when Ethan bends a leg far enough to reach his shoe to take it off - another task not possible prior to the treatment.
"His tone has really improved," she says.
Asked how his legs feel now, Ethan musters up a shy "good" and pulls up on his right shin, which moves with ease.
He's able to keep his legs spread apart for long periods of time, which has allowed him to wear Pull-Ups - important for a kid who just started kindergarten, his mom says.
He also walks on his knees more easily, and his mouth and tongue muscles are more relaxed, giving him better speech control.
However, his muscles' new pliability has its drawbacks. The loss of muscle tone means he can't go as far with his walker, and his muscles are short and tight from years of tension. He's unable to stand and must use a wheelchair.
On Sept. 24, a surgeon at Sanford Children's Hospital in Sioux Falls, S.D., will attempt to lengthen his Achilles tendons to get his feet flat on the ground and back into braces. After that, he'll be in casts for four to six weeks.
"But you've got to have the negative with the positive," his mother said. "It's been a good thing."
It'll take surgery and a lot of physical therapy, but Ethan's parents hope he'll someday walk with crutches. They've promised him a trip to Disney World when he does, turning his twin sister, Ashlee, and older brother, Connor, into his cheerleaders.
The stem cell treatment Ethan received, isn't available in the United States. Doctors extracted stem cells from his bone marrow and re-injected them into his spinal fluid, hoping they would replace dead cells and repair damaged cells in his brain.
Lisa and James Radtke raised $20,000 from the community for the surgery, and Lisa Radtke says she continues to receive feedback on Ethan's story. She says a family from Detroit Lakes, Minn., is taking their son with multiple sclerosis for the treatment, which Advancells claims has resulted in improvements for half of MS patients and two-thirds of cerebral palsy patients.
"I would do it again in a heartbeat," Lisa Radtke says.
Ethan Radtke (Part 2)
URL: (/patient-stories/cerebral-palsy/ethan-radtke-(part-2).aspx)
Never underestimate the power of Walt Disney World over a child. Ethan Radtke's parents promised him a trip to the Florida theme park if he could walk on crutches after having stem cell treatment in Germany in July for his cerebral palsy.
By:Mike Nowatzki, INFORUM, (www.inforum.com)
Never underestimate the power of Walt Disney World over a child.
Ethan Radtke's parents promised him a trip to the Florida theme park if he could walk on crutches after having stem cell treatmentin Germany in July for his cerebral palsy.
"I mean, we were anticipating next year he'd be walking with crutches, not six months later," said his mother, Lisa Radtke.
The West Fargo boy surprised them, taking his first steps with crutches three weeks ago and steadily improving since then.
It's another milestone for the 6-year-old, who had to use a wheelchair or walker or crawl to get around because of the stiffness and muscle spasms in his legs.
Ethan had surgery in September to lengthen his Achilles tendons so his feet could stand flat on the floor. His leg casts came off on Nov. 8.
"He just took off," his mom said. "It's just incredible to see him progress as much as he's progressed. And his attitude - he's went from this crabby little kid to this kid that therapists can do anything with."
The proud mom posted a video on YouTube showing Ethan's progress, which has made life at school and around the house easier and more enjoyable. He recently enrolled in Hope Inc.'s sled hockey program, and this summer he'll ride his first bicycle - though Ethan is already looking farther ahead.
"I'm going to get a scooter," he said Friday.
"To see the happiness on his face is just awesome," his mom said. "I don't think there's anything better than seeing your child well and happy and just enjoying life."
Radtke said Ethan's therapist believes that in time the boy could walk on his own. A week ago, Ethan stood for two seconds without assistance.
"That's a lifetime for a kid who hasn't stood before," she said.
Already, Ethan's ability to walk on crutches fulfills his parents' highest expectations when they booked the trip to the for therapy using Ethan's own stem cells, a treatment not available in the United States. The community donated $20,000 to help make the surgery possible.
"It's very gratifying, very exciting," Radtke said. "Every time he does something new, it's like watching a baby do something for the first time…It's thrilling."
Ethan, who has two siblings, will receive his Disney World reward in February 2012.
"It's a year away, but the kids are already arguing about who's going to sit next to the window," his mom said.
Before Treatment - KVLY TV8 North Dakota
Homecoming After Treatment July 2010 - FOX News
5 Month Progress After Treatment - KVLY TV8 North Dakota
Fox News Story from Ethan's July 20th Homecoming
By: Mike Nowatzki, INFORUM, (www.inforum.com),"North Dakota's #1 web site"
Ethan Radtke lies on his back on the living room floor and proudly crosses his legs. With a little prompting, he spreads them apart and pulls his knees up toward his chest.
"Oh, that's so awesome. Gimme five!" says Tressica Hasbargen, his occupational therapist.
The exercises may not seem that impressive to a stranger. But for this 5-year-old West Fargo boy, every new leg movement is a milestone.
Since receiving stem cell treatment for cerebral palsy two months ago in Germany, Ethan's stiff, spastic leg muscles have loosened significantly, allowing him to bend and flex his legs in ways he couldn't before.
His mother, Lisa Radtke, watches with a smile as Ethan sits in a kitchen chair, his legs apart and dangling below him, and tosses a ball into a bucket.
"For him to sit lik that before would have never happened," she says. "His legs were clasped together."
Hasbargen's eyes light up when Ethan bends a leg far enough to reach his shoe to take it off - another task not possible prior to the treatment.
"His tone has really improved," she says.
Asked how his legs feel now, Ethan musters up a shy "good" and pulls up on his right shin, which moves with ease.
He's able to keep his legs spread apart for long periods of time, which has allowed him to wear Pull-Ups - important for a kid who just started kindergarten, his mom says.
He also walks on his knees more easily, and his mouth and tongue muscles are more relaxed, giving him better speech control.
However, his muscles' new pliability has its drawbacks. The loss of muscle tone means he can't go as far with his walker, and his muscles are short and tight from years of tension. He's unable to stand and must use a wheelchair.
On Sept. 24, a surgeon at Sanford Children's Hospital in Sioux Falls, S.D., will attempt to lengthen his Achilles tendons to get his feet flat on the ground and back into braces. After that, he'll be in casts for four to six weeks.
"But you've got to have the negative with the positive," his mother said. "It's been a good thing."
It'll take surgery and a lot of physical therapy, but Ethan's parents hope he'll someday walk with crutches. They've promised him a trip to Disney World when he does, turning his twin sister, Ashlee, and older brother, Connor, into his cheerleaders.
The stem cell treatment Ethan received, isn't available in the United States. Doctors extracted stem cells from his bone marrow and re-injected them into his spinal fluid, hoping they would replace dead cells and repair damaged cells in his brain.
Lisa and James Radtke raised $20,000 from the community for the surgery, and Lisa Radtke says she continues to receive feedback on Ethan's story. She says a family from Detroit Lakes, Minn., is taking their son with multiple sclerosis for the treatment, which Advancells claims has resulted in improvements for half of MS patients and two-thirds of cerebral palsy patients.
"I would do it again in a heartbeat," Lisa Radtke says.
Ethan Radtke (Part 2)
URL: (/patient-stories/cerebral-palsy/ethan-radtke-(part-2).aspx)
Never underestimate the power of Walt Disney World over a child. Ethan Radtke's parents promised him a trip to the Florida theme park if he could walk on crutches after having stem cell treatment in Germany in July for his cerebral palsy.
By:Mike Nowatzki, INFORUM, (www.inforum.com)
Never underestimate the power of Walt Disney World over a child.
Ethan Radtke's parents promised him a trip to the Florida theme park if he could walk on crutches after having stem cell treatmentin Germany in July for his cerebral palsy.
"I mean, we were anticipating next year he'd be walking with crutches, not six months later," said his mother, Lisa Radtke.
The West Fargo boy surprised them, taking his first steps with crutches three weeks ago and steadily improving since then.
It's another milestone for the 6-year-old, who had to use a wheelchair or walker or crawl to get around because of the stiffness and muscle spasms in his legs.
Ethan had surgery in September to lengthen his Achilles tendons so his feet could stand flat on the floor. His leg casts came off on Nov. 8.
"He just took off," his mom said. "It's just incredible to see him progress as much as he's progressed. And his attitude - he's went from this crabby little kid to this kid that therapists can do anything with."
The proud mom posted a video on YouTube showing Ethan's progress, which has made life at school and around the house easier and more enjoyable. He recently enrolled in Hope Inc.'s sled hockey program, and this summer he'll ride his first bicycle - though Ethan is already looking farther ahead.
"I'm going to get a scooter," he said Friday.
"To see the happiness on his face is just awesome," his mom said. "I don't think there's anything better than seeing your child well and happy and just enjoying life."
Radtke said Ethan's therapist believes that in time the boy could walk on his own. A week ago, Ethan stood for two seconds without assistance.
"That's a lifetime for a kid who hasn't stood before," she said.
Already, Ethan's ability to walk on crutches fulfills his parents' highest expectations when they booked the trip to the for therapy using Ethan's own stem cells, a treatment not available in the United States. The community donated $20,000 to help make the surgery possible.
"It's very gratifying, very exciting," Radtke said. "Every time he does something new, it's like watching a baby do something for the first time…It's thrilling."
Ethan, who has two siblings, will receive his Disney World reward in February 2012.
"It's a year away, but the kids are already arguing about who's going to sit next to the window," his mom said.
Before Treatment - KVLY TV8 North Dakota
Homecoming After Treatment July 2010 - FOX News
5 Month Progress After Treatment - KVLY TV8 North Dakota
Lujina Ebraheim (4 years old), CP
Message from the mother of Luijina (Mrs. Ebraheim):
"Lujie my 4 year old daughter back in Oct. 28th 2010...Playing with blocks after the stem cell surgery at the clinic. She couldn't even maintain balance before the transplant then 2 weeks after the surgery she started walking on her own without any assistance." (January 2011)
"Lujie is our daughter, is 4 years and 2 month. She was diagnosed with cerebral palsy when she was 9 month. She couldn't talk, walk or even maintain balance. We kept searching for the last 4 years for a treatment until we found stem cells therapy in Germany. She made the surgery on Oct. 28, 2010 and Thank God she started walking without any assistance on Nov. 16th 2010. I hope she starts talking soon. We didn't need cord blood. The doctors used her own bone marrow for treatment." (November 2010)
Message from the mother of Luijina (Mrs. Ebraheim):
"Lujie my 4 year old daughter back in Oct. 28th 2010...Playing with blocks after the stem cell surgery at the clinic. She couldn't even maintain balance before the transplant then 2 weeks after the surgery she started walking on her own without any assistance." (January 2011)
"Lujie is our daughter, is 4 years and 2 month. She was diagnosed with cerebral palsy when she was 9 month. She couldn't talk, walk or even maintain balance. We kept searching for the last 4 years for a treatment until we found stem cells therapy in Germany. She made the surgery on Oct. 28, 2010 and Thank God she started walking without any assistance on Nov. 16th 2010. I hope she starts talking soon. We didn't need cord blood. The doctors used her own bone marrow for treatment." (November 2010)
Jacob Whitehouse 9 10 years old), Adrenoleukodystrophy
Home: Dorset, United Kingdom
Update after 2nd Treatment in Nov 2010
February 2011
Our son Jacob was diagnosed in Oct 2009 with Adrenoleukodystrophy, a life threatening brain disease that affects boys in different ways. It affected Jacob's walking, talking, eating, etc. The UK could not help us, so we searched the internet and found your center. Jacob had his first stem cell treatment in February 2010, followed by physiotherapy at ISST in Unna, Germany. Jacob did really well; as documented in our original story.
After his first treatment, Jacob continued to make progress, but in the summer he caught a very bad chest infection and was in bed for a few weeks. During that time, his walking deteriorated. Unfortunately, here in the UK, the physiotherapy and other treatments just didn't help Jacob at all. We tried taking him to the gym ourselves but we are not specialists. So, after discussion with your center, we decided to give Jacob another stem cell treatment followed by more physiotherapy.
In November 2010, Jacob had his second stem cell treatment followed by physiotherapy. We returned in Jan 2011. Jacob sailed through the lumbar puncture with no problems at all and after just 2 days of physiotherapy, he started to walk again! Absolutely amazing! He had 6 days of physiotherapy and left there walking again; not unaided but not far off. We are going back this April for more physiotherapy to keep him going.
In the meantime, we've realized that we also need help here in the UK and for the last 6 months or so, we have been trying to find that help. Jacob has been accepted into a special needs disabled school, which can now help us maintain, and hopefully even improve, his walking. We hope that by the time we return to Germany in April, they can take him to the next level.
For Jacob, your center has worked! We have seen big improvements. We were told when Jacob was diagnosed that he had approximately two years to live and within 6 months, he would be bedridden. We are now 16 months on and Jacob is talking, walking again much better and atttending school full-time. He is enjoying life like he always does, and we have published a website to help others www.smile4jacob.co.uk. Other families have already booked! There is hope and this is the place that can help!
We are not sure if Jacob will need another stem cell treatment but if he does, we have no problems bringing him back to your center where he was thoroughly looked after. After all, they have given Jacob the chance of living, which is more than the UK could give us!
We thank you from the bottom of our hearts. Without you, I couldn't tell you where we would be right now! If you are considering treatment at your center, think about what you have just read. They can also give your family hope.
Original Information
Background and Diagnosis
Our 10 year old son Jacob was diagnosed with a rare brain disease in Oct 09 ALD (adrenoleukodystrohy). Before this, Jacob was a normal boy running around and full of confidence and life. He started walking strange in June of last year while we were on holiday and then started to deteriorate rapidly. His speech became slurred. His posture and balance became a problem and his whole mouth went lopsided like he had a stroke. His right hand had clawed up and so did his right foot. He started having problems eating, chewing and swallowing. I had to liquefy food and chop it into tiny amounts.
Jacob went from being a very active boy to sitting on the sofa barley moving with no energy. He was extremely tired all the time, and could neither feed nor dress himself. By November he was in a wheelchair and stopped going to school. The consultants in the UK told us that he would live for approx 2 years and that the disease would spread across his whole brain. They said that within 6 months, he would probably be bedridden; the worst news possible to hear about your own child.
However, the worst was still to come as they told us there was no treatment or cure.
There are only 70 kids in the UK with this disease so there is limited research funding. It was a lot to take in but one thing was for sure when we left the hospital that day. We would find a cure or treatment and not give up! So, we began researching on the internet and that's when my Husband Martyn came across the stem cell treatment and the clinic which has now become our life line!
At the Clinic
I got in touch with your consultant who researched this disease and decided to take Jacob on as a patient even though you had never dealt with this disease before.
So we booked the lumbar puncture procedure and went in February of 2010. Jacob had his lumbar puncture on the February 11th. He did really well and with a few hours of leaving the hospital, ending up playing in the play area where we were staying!
The clinic staff were great. We had all the information we needed, and were given a warm welcome when we arrived. We were looked after as soon as we walked through their doors. They were great with Jacob and explained to him what was going to happen. We also took our 6 year-old son Samuel, and they really made Sam feel part of it also.
While we were there, we were introduced to a person, who runs the specialised physiotherapy alongside the stem cell treatment. We spent an hour with her as she trained us on the physiotherapy we needed to do after Jacobs treatment; especially the mouth area as Jacob had huge problems in that area.
Results
Within a few days, we noticed that Jacob was eating better and his face was changing. The lopsided mouth was starting to go back to normal, he was starting to chew proper food, and it wasn't getting stuck in his mouth.
Upon returning home, Jacob started making small improvements and started sucking through a straw again, which he hadn't been able to do. His right hand seemed to be un-clawing itself and his face was beginning to return to normal. His walking was still a huge problem so we decided to book a week's worth of physiotherapy. We believe this therapy works hand in hand with the stem cell treatment.
We went in April of this year and today Jacob is back at school full time. He can hold a pencil again and is learning to write again as well. His right hand is pretty much un-clawed and he is eating and chewing normally. His posture and balance is so much better. He has his energy back and we are now working with a training programme through to rehabilitate Jacob. We are teaching him how to hold a spoon again, dress himself again etc. His walking has improved about 20%, his face is totally back to normal and although his right side is still weaker than his left, with the programme, his strength is returning. He hates his wheelchair, so where possible, Jacob walks. He manages all day at school without it. Jacob is a very determined boy; a fighter.
We are going back in August of this year to visit the clinic for a second lumbar puncture assessment. While we are there, Jacob will be having another few days of physiotherapy.
Since February, we haven't looked back. With the help of all involved, we know have hope. All I can say is, "Thank God we found you!" Thank you isn't enough to say when we can see our son returning back to how he was in September last year! And we will keep coming if that's what it takes.
We now hope that Jacob will keep improving. Since Jacob is the first child in the world to have this form of stem cell treatment, nobody knows the eventual outcome. We just stay strong and positive and keep up the fight in getting Jacob better.
Home: Dorset, United Kingdom
Update after 2nd Treatment in Nov 2010
February 2011
Our son Jacob was diagnosed in Oct 2009 with Adrenoleukodystrophy, a life threatening brain disease that affects boys in different ways. It affected Jacob's walking, talking, eating, etc. The UK could not help us, so we searched the internet and found your center. Jacob had his first stem cell treatment in February 2010, followed by physiotherapy at ISST in Unna, Germany. Jacob did really well; as documented in our original story.
After his first treatment, Jacob continued to make progress, but in the summer he caught a very bad chest infection and was in bed for a few weeks. During that time, his walking deteriorated. Unfortunately, here in the UK, the physiotherapy and other treatments just didn't help Jacob at all. We tried taking him to the gym ourselves but we are not specialists. So, after discussion with your center, we decided to give Jacob another stem cell treatment followed by more physiotherapy.
In November 2010, Jacob had his second stem cell treatment followed by physiotherapy. We returned in Jan 2011. Jacob sailed through the lumbar puncture with no problems at all and after just 2 days of physiotherapy, he started to walk again! Absolutely amazing! He had 6 days of physiotherapy and left there walking again; not unaided but not far off. We are going back this April for more physiotherapy to keep him going.
In the meantime, we've realized that we also need help here in the UK and for the last 6 months or so, we have been trying to find that help. Jacob has been accepted into a special needs disabled school, which can now help us maintain, and hopefully even improve, his walking. We hope that by the time we return to Germany in April, they can take him to the next level.
For Jacob, your center has worked! We have seen big improvements. We were told when Jacob was diagnosed that he had approximately two years to live and within 6 months, he would be bedridden. We are now 16 months on and Jacob is talking, walking again much better and atttending school full-time. He is enjoying life like he always does, and we have published a website to help others www.smile4jacob.co.uk. Other families have already booked! There is hope and this is the place that can help!
We are not sure if Jacob will need another stem cell treatment but if he does, we have no problems bringing him back to your center where he was thoroughly looked after. After all, they have given Jacob the chance of living, which is more than the UK could give us!
We thank you from the bottom of our hearts. Without you, I couldn't tell you where we would be right now! If you are considering treatment at your center, think about what you have just read. They can also give your family hope.
Original Information
Background and Diagnosis
Our 10 year old son Jacob was diagnosed with a rare brain disease in Oct 09 ALD (adrenoleukodystrohy). Before this, Jacob was a normal boy running around and full of confidence and life. He started walking strange in June of last year while we were on holiday and then started to deteriorate rapidly. His speech became slurred. His posture and balance became a problem and his whole mouth went lopsided like he had a stroke. His right hand had clawed up and so did his right foot. He started having problems eating, chewing and swallowing. I had to liquefy food and chop it into tiny amounts.
Jacob went from being a very active boy to sitting on the sofa barley moving with no energy. He was extremely tired all the time, and could neither feed nor dress himself. By November he was in a wheelchair and stopped going to school. The consultants in the UK told us that he would live for approx 2 years and that the disease would spread across his whole brain. They said that within 6 months, he would probably be bedridden; the worst news possible to hear about your own child.
However, the worst was still to come as they told us there was no treatment or cure.
There are only 70 kids in the UK with this disease so there is limited research funding. It was a lot to take in but one thing was for sure when we left the hospital that day. We would find a cure or treatment and not give up! So, we began researching on the internet and that's when my Husband Martyn came across the stem cell treatment and the clinic which has now become our life line!
At the Clinic
I got in touch with your consultant who researched this disease and decided to take Jacob on as a patient even though you had never dealt with this disease before.
So we booked the lumbar puncture procedure and went in February of 2010. Jacob had his lumbar puncture on the February 11th. He did really well and with a few hours of leaving the hospital, ending up playing in the play area where we were staying!
The clinic staff were great. We had all the information we needed, and were given a warm welcome when we arrived. We were looked after as soon as we walked through their doors. They were great with Jacob and explained to him what was going to happen. We also took our 6 year-old son Samuel, and they really made Sam feel part of it also.
While we were there, we were introduced to a person, who runs the specialised physiotherapy alongside the stem cell treatment. We spent an hour with her as she trained us on the physiotherapy we needed to do after Jacobs treatment; especially the mouth area as Jacob had huge problems in that area.
Results
Within a few days, we noticed that Jacob was eating better and his face was changing. The lopsided mouth was starting to go back to normal, he was starting to chew proper food, and it wasn't getting stuck in his mouth.
Upon returning home, Jacob started making small improvements and started sucking through a straw again, which he hadn't been able to do. His right hand seemed to be un-clawing itself and his face was beginning to return to normal. His walking was still a huge problem so we decided to book a week's worth of physiotherapy. We believe this therapy works hand in hand with the stem cell treatment.
We went in April of this year and today Jacob is back at school full time. He can hold a pencil again and is learning to write again as well. His right hand is pretty much un-clawed and he is eating and chewing normally. His posture and balance is so much better. He has his energy back and we are now working with a training programme through to rehabilitate Jacob. We are teaching him how to hold a spoon again, dress himself again etc. His walking has improved about 20%, his face is totally back to normal and although his right side is still weaker than his left, with the programme, his strength is returning. He hates his wheelchair, so where possible, Jacob walks. He manages all day at school without it. Jacob is a very determined boy; a fighter.
We are going back in August of this year to visit the clinic for a second lumbar puncture assessment. While we are there, Jacob will be having another few days of physiotherapy.
Since February, we haven't looked back. With the help of all involved, we know have hope. All I can say is, "Thank God we found you!" Thank you isn't enough to say when we can see our son returning back to how he was in September last year! And we will keep coming if that's what it takes.
We now hope that Jacob will keep improving. Since Jacob is the first child in the world to have this form of stem cell treatment, nobody knows the eventual outcome. We just stay strong and positive and keep up the fight in getting Jacob better.
Myrthe Wallet (6 years old), Myocarditis and Brain Hypoxia
Myocarditis caused by viral infection and brain hypoxia after cardiac arrest.
How it happened (told by the parents of Myrthe, both teachers)
When Myrthe was eleven months old she became infected with an unknown virus. As it was hard for Myrthe to breathe the doctors first thought she had asthma. Then, her heart stopped beating for approximately ten minutes and the oxygen supply to her brain was cut off. They transferred her from one hospital to another and eventually she was taken to the German Heart Institute in Berlin. They confirmed the diagnosis: cardiac arrest followed by brain hypoxia. The doctors tried to support her brain and her heart but cardiac arrest and oxygen deprivation had already caused severe brain damage.
The Consequence
Myrthe was in a poor condition. She could not sit any more, crawl or hoist herself up to stand. She could not see, she stopped babbling, became apathetic and on top of everything else Myrthe developed epilepsy. We took her to a rehabilitation centre but soon had to accept that they just could not help her. While we were looking for further treatment options we all travelled to England. We had heard about a treatment for neurosensory disorders and decided to try it. The therapy regime involved numerous exercises, which follow a strict programme and had to be done with the patient on a daily basis. After six months the patient is re-examined and the plan adjusted. We followed the programme for two and a half years but noticed little improvement although it helped to keep the epilepsy under control.
We constantly checked the Internet and the press for further treatment options. We were particularly interested in stem cell therapy and hyperbaric oxygen therapy and discussed both therapies with the doctors. We were told stem cell therapy very promising but not for at least ten years.
In the USA we found a centre offering hyperbaric oxygen therapy. The therapy was designed to last for ten months. Unfortunately, we could not afford the treatment and our health insurance company had refused to meet the costs. We clung so much to the hope that hyperbaric oxygen therapy could help Myrthe. Therefore, we set up a foundation and started to search for donors. Thanks to the generosity of one man we soon had enough money to start therapy in the USA in March 2005. The whole family stayed in the USA for five months. As we are both teachers we were able to teach our sons ourselves. Our schools back at home were very supportive. They knew all about the troubles with Myrthe and agreed to reduce our working hours so we could work part-time. Of course, there was so much to be organised but everybody helped to make our stay in the USA possible.
We finally returned home after ten months. We, including our parents, brothers and sisters, had hoped that, after finishing hyperbaric oxygen therapy, Myrthe would be able to sit, walk or at least crawl. But she could not. However, her spasms were fewer and only in the mornings were Myrthe's muscles all stiff. Her eyesight got better and she started to utter sounds, which, to her, seemed to be words. Also, her ability to sense the world around her improved. Although, this was only noticeable to us, it still signified an improvement. Hyperbaric oxygen therapy then became available over here in The Netherlands and so we are able to continue Myrthe's therapy from home.
What else could be done? We checked on how far stem cell therapy had developed but immediately agreed that embryonic stem cells were not an option. One day, we read an article in the newspaper about the positive results of a patient who had been treated with his own stem cells. That was the kind of treatment we had been looking for! After we had discovered that Advancells was the provider of the therapy we immediately made an appointment to be considered for treatment. We did not say a word to our parents or to our brothers and sisters.
First stem cell treatment in June 2006
Myrthe's muscle spasms made bone marrow extraction difficult but, fortunately, not impossible. Due to her crooked back the doctors again faced difficulties re-injecting the stem cells: Lumbar injection was not possible so the cells were administered intravenously.
The Result
We visited our families only two weeks after the stem cell re-injection. They were absolutely amazed when they saw Myrthe and asked us what we had done with her. We lifted Myrthe to her feet and, as the muscles had relaxed and the paralysis had decreased, she straightened her legs and put her feet flat to the ground. We had another small triumph to show to our family. Before when we sat Myrthe into her chair her body tended to tilt sideways as she tried to keep it in balance. This time she sat all by herself, without any help. Of course, the moments of triumph were short and infrequent, but still they existed! And Myrthe continued to triumph: She started to follow the conversations around her and even participated. She understood what we were saying and acted accordingly. Although she did not speak whole sentences, she started using sounds and short words and she even expressed her feelings. She also seemed to be able to see. When showing her an item she could name it if she had a sound or a word for it. When her brothers stood close to her, she recognized them and also knew who is who. She even called them by name, which is something all three of them appreciated a lot. They did not mind us spending so much time with Myrthe surprisingly; they coped with it quite well and even benefited from it. They had the chance to spend some time in England and in the USA. They continue to be a real delight and bring so much joy and pleasure to us. They are happy and amusing boys and do not cause any trouble at all. They are even doing very well at school.
Second Stem Cell Treatment in November 2006
Bone marrow extraction was a lot easier this time. They were able to isolate twice the amount of stem cells than they needed. Some of the cells were frozen and stored for further treatment.
The Result
Myrthe keeps getting better and better. Now she can properly balance her body. If she leans too far over, she hoists herself into an upright position. Her muscles are more relaxed and training is not as hard any more. Myrthe also seems to enjoy training with the exercise equipment we have set up for her. Of course, we still hope that time will bring further progress. It is particularly the improvement in balance that keeps us optimistic. After all, keeping your balance is the prerequisite for standing and walking. Maybe one day Myrthe will learn how to walk.
Our Advice
You should try any therapy, which is ethically and medically acceptable.
Myocarditis caused by viral infection and brain hypoxia after cardiac arrest.
How it happened (told by the parents of Myrthe, both teachers)
When Myrthe was eleven months old she became infected with an unknown virus. As it was hard for Myrthe to breathe the doctors first thought she had asthma. Then, her heart stopped beating for approximately ten minutes and the oxygen supply to her brain was cut off. They transferred her from one hospital to another and eventually she was taken to the German Heart Institute in Berlin. They confirmed the diagnosis: cardiac arrest followed by brain hypoxia. The doctors tried to support her brain and her heart but cardiac arrest and oxygen deprivation had already caused severe brain damage.
The Consequence
Myrthe was in a poor condition. She could not sit any more, crawl or hoist herself up to stand. She could not see, she stopped babbling, became apathetic and on top of everything else Myrthe developed epilepsy. We took her to a rehabilitation centre but soon had to accept that they just could not help her. While we were looking for further treatment options we all travelled to England. We had heard about a treatment for neurosensory disorders and decided to try it. The therapy regime involved numerous exercises, which follow a strict programme and had to be done with the patient on a daily basis. After six months the patient is re-examined and the plan adjusted. We followed the programme for two and a half years but noticed little improvement although it helped to keep the epilepsy under control.
We constantly checked the Internet and the press for further treatment options. We were particularly interested in stem cell therapy and hyperbaric oxygen therapy and discussed both therapies with the doctors. We were told stem cell therapy very promising but not for at least ten years.
In the USA we found a centre offering hyperbaric oxygen therapy. The therapy was designed to last for ten months. Unfortunately, we could not afford the treatment and our health insurance company had refused to meet the costs. We clung so much to the hope that hyperbaric oxygen therapy could help Myrthe. Therefore, we set up a foundation and started to search for donors. Thanks to the generosity of one man we soon had enough money to start therapy in the USA in March 2005. The whole family stayed in the USA for five months. As we are both teachers we were able to teach our sons ourselves. Our schools back at home were very supportive. They knew all about the troubles with Myrthe and agreed to reduce our working hours so we could work part-time. Of course, there was so much to be organised but everybody helped to make our stay in the USA possible.
We finally returned home after ten months. We, including our parents, brothers and sisters, had hoped that, after finishing hyperbaric oxygen therapy, Myrthe would be able to sit, walk or at least crawl. But she could not. However, her spasms were fewer and only in the mornings were Myrthe's muscles all stiff. Her eyesight got better and she started to utter sounds, which, to her, seemed to be words. Also, her ability to sense the world around her improved. Although, this was only noticeable to us, it still signified an improvement. Hyperbaric oxygen therapy then became available over here in The Netherlands and so we are able to continue Myrthe's therapy from home.
What else could be done? We checked on how far stem cell therapy had developed but immediately agreed that embryonic stem cells were not an option. One day, we read an article in the newspaper about the positive results of a patient who had been treated with his own stem cells. That was the kind of treatment we had been looking for! After we had discovered that Advancells was the provider of the therapy we immediately made an appointment to be considered for treatment. We did not say a word to our parents or to our brothers and sisters.
First stem cell treatment in June 2006
Myrthe's muscle spasms made bone marrow extraction difficult but, fortunately, not impossible. Due to her crooked back the doctors again faced difficulties re-injecting the stem cells: Lumbar injection was not possible so the cells were administered intravenously.
The Result
We visited our families only two weeks after the stem cell re-injection. They were absolutely amazed when they saw Myrthe and asked us what we had done with her. We lifted Myrthe to her feet and, as the muscles had relaxed and the paralysis had decreased, she straightened her legs and put her feet flat to the ground. We had another small triumph to show to our family. Before when we sat Myrthe into her chair her body tended to tilt sideways as she tried to keep it in balance. This time she sat all by herself, without any help. Of course, the moments of triumph were short and infrequent, but still they existed! And Myrthe continued to triumph: She started to follow the conversations around her and even participated. She understood what we were saying and acted accordingly. Although she did not speak whole sentences, she started using sounds and short words and she even expressed her feelings. She also seemed to be able to see. When showing her an item she could name it if she had a sound or a word for it. When her brothers stood close to her, she recognized them and also knew who is who. She even called them by name, which is something all three of them appreciated a lot. They did not mind us spending so much time with Myrthe surprisingly; they coped with it quite well and even benefited from it. They had the chance to spend some time in England and in the USA. They continue to be a real delight and bring so much joy and pleasure to us. They are happy and amusing boys and do not cause any trouble at all. They are even doing very well at school.
Second Stem Cell Treatment in November 2006
Bone marrow extraction was a lot easier this time. They were able to isolate twice the amount of stem cells than they needed. Some of the cells were frozen and stored for further treatment.
The Result
Myrthe keeps getting better and better. Now she can properly balance her body. If she leans too far over, she hoists herself into an upright position. Her muscles are more relaxed and training is not as hard any more. Myrthe also seems to enjoy training with the exercise equipment we have set up for her. Of course, we still hope that time will bring further progress. It is particularly the improvement in balance that keeps us optimistic. After all, keeping your balance is the prerequisite for standing and walking. Maybe one day Myrthe will learn how to walk.
Our Advice
You should try any therapy, which is ethically and medically acceptable.
