" Every month she got fifteen seizures or twenty seizures in one day, big seizures, and she was always full of medicines, and she was very bad always. After the treatment she stopped having seizures. It was only one time. The one day it was fifteen, but she didn’t have it anymore. "
Leonardo's parents, Alfredo and Emanuela, noticed that Leonardo was having problems soon after he was born. He was eventually diagnosed with leukodystrophy and a genetic test confirmed that it was Pelizaeus-Merzbacher Disease, a rare hereditary form of leukodystrophy. The disease affects the growth of myelin sheaths, which surrounds axons in the brain and are essential for proper neural functioning. This abnormal growth causes symptoms similar to cerebral palsy. Patients with this condition often have poor tone and muscle control and delayed cognitive development.
Leonardo's symptoms were fairly typical, as his father explains, "What struck me immediately when he was younger was the fact he couldn't hold his head up. His head was wobbling. He had no trunk control, no muscle tone anywhere. The first medical visits didn't give us any useful information. The doctors were saying, maybe the baby needs to grow, maybe he will recuperate with time. But years passed and he didn't recuperate."
Since they failed to find effective treatment at home, Leonardo's parents began to look elsewhere. Alfredo found out about the possibility of stem cell treatment and decided to take a trip to China to see the treatment center for himself.
Alfredo said "We were really undecided. It took me a year to try to persuade my wife to consider treatment. Until I proposed it as a leisure trip to China, I said 'let's visit China, it is a charming country after all, and when we are there we can take the chance to visit the hospital, let's go see how it is, let's see what they do…' So we went, we met with the interpreter, with the local coordinator, we spoke with the doctor, Dr. Tony, and we had a good impression. They clearly explained how stem cells worked, what we could expect from the treatment, what we couldn't expect. And we appreciated this as we weren't given any promises of miracles. We were given fair hope. We were told there was a possibility, so we decided to take this chance. We decided to try."
After a positive first treatment, his family accompanied him back to China for two more rounds of stem cell therapy.
Treatment in China
Leonardo came to China for stem cell treatment three separate times in 2008, 2009 and 2010. During each trip he received adult stem cell injections along with physical therapy, occupational therapy, electric wave therapy, and acupuncture.
Condition After Treatment
In 2008, while Leonardo was in the hospital receiving his first stem cell treatment, his parents soon began to notice some small changes in his condition. Though they were doubtful at first, these turned out to be significant and have persisted ever since.
Alfredo said, "One of the symptoms of this condition, Pelizaeus-Merzbacher Disease, is ocular nystagmus that makes the eyes jerk horizontally without rest, so that one cannot focus on any object. After the first injection there was a slight improvement with this, we noticed it, but we thought it was too quick to be true.
"Another thing that we immediately noticed was an improvement in the narrowness of his throat. Leonardo had often had problems swallowing and we had to feed him small chunks or liquids and still he often would choke. Yet soon after the first injection his throat widened, and this was a dramatic effect of the stem cells.
"The important aspect is that these improvements have stayed at the same level. The first time we came it was June 2008, now it's June 2010, so it is almost 2 years and the results have remained the same."
Leonardo's motor control also improved. His father said "Another important improvement after the first injections was that Leonardo managed to open and close his hand completely, whereas before the treatment his hand used to be all folded up, he couldn't extend the fingers. Now, he can do that easily, and he can count with his fingers. His fine motor control is still far from being perfect but it is better. Movements of his arm also have improved, before the movements used to be jerky. We can say the therapy has helped reduce the spasticity of the muscle, so he can now move his arm more slowly and with more coordination, and this is surely an improvement."
Most important for his parents was the rapid development of previously delayed cognitive functions following stem cell treatment. "Before the treatment his words were really confused, we had to put in extra effort to understand what he was saying. Now you still need some concentration to get the meaning. However he makes himself understood really well. If someone doesn't understand him, Leonardo tries to find a way to get his meaning through. For instance if he could not pronounce 'ball' he would try again with 'the thing that bounces.' He can find a logical strategy, I believe this is evidence of an improvement in his cognition."
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Sisters from Hong Kong, both Celia and Angelica have CP. Angelica also has ROP--a common retinal problem common in premature births. They received adult stem cell therapy together in Shanghai, China.
Celia
2 years old Cerebral Palsy
Angelica
4 years old Cerebral Palsy and Retinopathy of Prematurity (ROP)
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Angelica was born prematurely, and as a result suffered a brain injury which lead to Cerebral Palsy and ROP. Her mother, Eileen describes her condition, "we have found that her speech is quite delayed and so is her interaction with other people. Her vision is pretty bad because she has ROP"
Her sister, unfortunately, was also diagnosed with CP at the age of one and a half. Her mother describes her symptoms, "the major problem with Celia is related to motor problems, her gross motor skills are lacking and there is some delay with her fine motor skills... She could not walk before she came here, and her balance was very poor so her alignment was off when standing, so she had very poor posture."
Though both girls were receiving conventional therapy in Hong Kong and doing well, their parents were afraid that they were not reaching the proper developmental milestones. After careful research, they decided that stem cell therapy would help their daughters meet their goals.
Treatment in China
Both Sisters received 6 umbilical cord blood stem cell injections along with physical therapy, occupational therapy, electric wave therapy, and acupuncture.
Condition After Treatment
After receiving stem cell treatment, both sisters started experiencing changes in their condition.
Celia, in particular, saw dramatic improvement in her strength and mobility. Her mom explains, "After the second treatment, she got more power. She was willing to stand more and she asked me to help her to stand up and she wants to walk. And she can. She is starting to walk! I am very happy to see this result. She stands and walks, I think, around 4 hours a day. And before she came here she could not stand for so long. Probably a half hour a day is all she could do."
Eileen also saw improvements in Angelica's behavior and vision, "Well she has more interaction with people and I think there is some improvement in her vision, because when I take pictures of her and I tell her to look at the camera she really is able to look at the camera. So I am pleased to see this result too.
"When I talk to her and ask her to do something, it seems like she really hears it and she does what I tell her. She is actually listening. So I am pleased to see her behaviors change. I think it helps my elder daughter catch up in her development."
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Medical History
Kaelyn was a healthy Child until she suffered an anoxic ischemic brain injury during an MRI. During the MRI, she accidentally extubated herself which caused her to choke. Her brain was deprived of oxygen. After the accident, her doctors didn't give her much chance. Her parents were aggressive in seeking out new therapies and Kaelyn, though still physically disabled, has thrived. Her mom Sandra describes her condition before coming to China, "She cannot walk, talk crawl, any of that stuff, but she completely understands and is aware of everything it's just primarily physical now. Ever since she has had the injury both at the hospital and after that me and her dad have been very aggressive with her different therapies, as well as many alternative type therapies." Her parent's had previously taken Kaelyn for stem cell therapy. Her mom describes how this informed their decision to come to China, "This isn't the first time we have done stem cells. We have done it to some extent, not to this degree, but we have done it in the past. We've been able to maintain what we got based on doing a lot of therapy. Getting her through the humps or the plateaus. So our expectation is to go back home get the work in her and then if we see any changes. This isn't a holiday for us, it may seem like it but we look at it as just a beginning to the next step."
Treatment in China
Kaelyn received 6 umbilical cord blood stem cell and 1 Bone Marrow aspiration injections. She also received physical therapy, occupational therapy, electric wave therapy, and acupuncture.
Condition after Treatment
With the combination of therapy and stem cells, Kaelyn's condition slowly began to change. Her mom describes some of the first changes they saw, "She seems to be getting stronger, both in the trunk, as well as in the arms. Before her movement was very sporadic and very robotic. Now it seems to be more purposeful. She reaches like she used to, but it seems to be more on her intent, and she seems to get to the stuff better now." Thinking about bringing Kaelyn back for another round of treatments, Kaelyn's father said "As far as the distance, we never thought about the distance. It is 'where do we think is the best benefit for her'. And if we believe that is in Qingdao or Shanghai or whereever the hospital is at that point. It doesn't matter to us."
Najib has suffered from seizures since the age of 4 months. His seizures are rare but extreme, lasting at times for more than two hours. His CP affects both gross and fine motor skills as well as his ability to talk. Najib is generally happy but unable to truly engage objects or people for any length of time. His vision is delayed and this affects his ability to coordinate hand and eye function. He cannot sit, crawl or walk independently and cannot maintain his own weight in a standing position for any length of time.
Treatment in China
Six transplants of umbilical cord blood stem cells including 2 IVs and 4 Spinals. Daily physical therapy and acupuncture.
Condition Following Treatment
Najib received a total of 6 treatments while in Qingdao, 2 IVs and 4 Spinals and he began to experience improvements almost immediately following his first treatment. Najib could focus his eyes on objects at a distance greater than one meter and was also able to stand at a table self-supporting his weight for at least 5-7 minutes. He also began to notice small objects placed in front of him and attempted to grab at them.
If you would like to watch Leena and her family talk about their experience coming from the US to China for adult stem cell therapy check out her video at Vimeo here or click on the picture below.
Reason for Coming for Treatment
Leena was diagnosed with athetoid cerebral palsy at the age of 2. Leena's mother explains, "I really wanted her to have less. I was hoping the stem cells would stop the involuntary movement."
