" You know before stem cells, every two to three months he has to see like nine different doctors. So since the first round of stem cells, he came back for a follow up visit. And so they don’t want to see him anymore, and that’s a big thing. "
"Her world is a happier place now... it's enhanced her quality of life."
Cchris, Michaela's Father
Condition Prior to Treatment
Michaela Sky is a surviving twin born 16 weeks premature who developed Secondary Dystonia. The condition is marked by uncontrolled and repetitive muscle movements and contractions. Without being able to use muscles in a normal manner, people with Secondary Dystonia face further developmental challenges. People with Secondary Dystonia often receive a cocktail of drugs designed to control their specific muscle behaviors. These medications often have side-effects which require further medication to control.
Michaela's father described her muscle skills as "very robotic. Every movement was a very big effort." Her legs were stuck in a scissors-like position. Her joints gave her a lot of pain, always in a locked position. Her father hoped that the stem cell treatments would help avoid the need for a "pump in her back" to administer drugs.
Michaela's condition requires near-constant attention from her caregivers. Prior to stem cell treatments she slept poorly, her bowels always required attention and feeding her was a challenge. "She was like a Raggedy-Anned doll," her father said. "She had no control of her mid-line; no control of her trunk."
"Little changes lead to big changes."
Course of Treatment in China
Michaela has traveled to China twice for cycles of umbilical blood stem cell transplants. During each cycle she received IV and spinal injections of donated adult stem cells and participated in physical therapy. Her first treatment was in 2009 and her second in 2011.
"Kids with special needs have a mind of their own. Don't treat them like they don't exist."
Condition Following Treatments
Stem cell therapy for Secondary Dystonia does not offer a cure but seeks to alleviate symptoms of the condition. Michaela still uses a wheelchair. She still faces challenges similar to those faced by people with spinal cord injuries and cerebral palsy.
But Michaela can also use a walker now. After the the first treatment her muscle control improved to a level where she stand in a walker and propel herself about in it. He said "She has more control of her posture. More control of her limbs. She eats well. She sleeps well," all things presenting significantly greater challenges prior to the treatments. Many parents eventually choose surgery to install a feeding pump in
their children to help minimize the hours of the day required to feed
them.
She's now a happy eater. She eats everything except bananas.
She can hold her head and hands much better. While she can't feed herself yet, her ability to interact with objects is now a work-in-progress rather than an impossibility. Cchris tells us "She has a strong back. She has strong control of her trunk." The pain in her joints has been reduced. "Look at what she has accomplished in such a short time," Cchris says. His hope is to continue to avoid the need for medicine pumps and feeding tubes.
Angelica suffered brain damage due to lack of oxygen and was diagnosed with PVL or Cystic Periventricular Leukomalacia.
Condition Prior to Treatment
Angelica was virtually inactive. Her mother Roxanne told us, “her arms were clinched, her legs were just there and she could do that for hours. For days that's all she did."
Angelica had very little head movement. Her eyes flickered back and forth.
Treatment in China
Angelica received 6 packets of umbilical cord mesenchymal stem cells via IV and lumbar puncture. She also received daily physical therapy, acupressure, and traditional Chinese massage.
Condition Following Treatment
Angelica's mother Roxanne noticed changes in Angelica immediately following treatment. She told us Angelica “never used to stand. She started standing. She's rolling over now, and she used to barely be able to lift her head off the ground."
Angelica "developed a personality" while receiving therapy in China, and began expressing likes and dislikes.
Angelica's family is already planning a return trip to China. Her mother Roxanne said “the amount of change she's gone through has given me a new life."
Summer was born premature and suffered head trauma in the birth canal causing a grade 4 bleed in her brain. At 17 months of age, she was diagnosed with Cerebral Palsy with Spastic Quadriplegia.
Condition Prior to Treatment
Prior to treatment, Summer was unable to stand independently. She had poor head and trunk control. Summer had limited movement in her left arm and hand. She had high muscle tone.
Treatment Received in China
Summer received IV and LP injections of donated umbilical cord blood stem cells along with physical therapy.
Condition Following Treatment
Following six weeks of treatment Summer’s parents identified several improvements or “things that she couldn’t do before that she’s able to do now.” Hyper-tonicity in her left hand and arm reduced significantly allowing her to control her motions in ways she never has before. During electro-wave therapy Summer began responding to sensation in her legs.
Summer’s neck strength improved significantly allowing her to keep her head up far longer than before. Her energy levels went up as well.
Seth's video can be played by clicking the Play button on the image above. Please give the video a moment to load. Can't see the video? Click here to find out why. Watch the video at Vimeo directly here.
Diagnosis
Seth was diagnosed with Cerebral Palsy and Optic Nerve Hypoplasia.
Condition Prior to Treatment
Seth had very limited light perception in his left eye. He was not able to sit up alone, crawl, walk, or talk.
Treatment Received in China
Seth received 7 IV stem cell transplants.
Condition Following Treatment
In China, Seth's family noticed that his eyes began to dilate. After returning home, Seth began to reach for objects. His family noticed that he was more active.
Seth has started making more sounds and is trying to communicate more with his family. His speech therapist has noticed a big improvement in his speech and communication skills.
Seth can now sit up and hold his head up easier. He tries to feed himself. Seth's doctors have hope that he will walk in the future.
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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