Reasons to hope

Here are some stories about patients suffering from Cerebral Palsy who have had great results from the XCell center using Adult Stem Cell therapy.

Patient story of Myrthe Wallet, 6 years, Myocarditis and Brain Hypoxia
Date of birth: 2000
Family: Myrthe has three brothers

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 US 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 US in March 2005. The whole family stayed in the US 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 US 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 Xcell-Center 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 US. 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.



Patient story of Nicolas Schilling, 5 years, Cerebral palsy due to periventricular leucomalacia
DOB: 9 Nov. 2004
Disease treated: Periventricular Leucomalacia

Nicolas has two sisters, Pauline, age 6 and Mathilda

As told by Nicolas' mother Anne Schilling

Premature birth with consequences
Our son Nicolas was born unexpectedly and prematurely by Caesarean section after 30 weeks of pregnancy. We were on vacation at that time and the medical treatment was not optimal. Just a few weeks after his birth, it was clear that Nicolas had suffered periventricular leucomalacia; large regions of his brain appeared to be damaged.

The full extent became apparent only at the age of about 1 1/2 years. Nicolas is a severely handicapped child; he is tetraspastic with impaired head control, cannot move his hands properly, can sit only when propped up, cannot walk, or crawl, has difficulties speaking, and has impaired vision. After about a year, Nicolas also developed epilepsy and suffered seizures; fortunately, however, he is currently free of seizures thanks to proper medication.

In the following years, we tried everything to improve Nicolas’ situation and develop his capabilities. With intensive physical therapy, bio-feedback therapy, Galileo therapy, early childhood vision intervention, osteopathy, and therapeutic riding, Nicolas was able to make minimal progress. Before the birth of our third daughter, we read up on umbilical cord blood, hoping that Nicolas might benefit from it one day.

At a rehabilitation congress, we met Mr. Ludemann from the XCell-Center, who told us a lot about the topic of adult stem cell therapy. We were skeptical and had a lot of qualms and fears. What would the stem cells do to Nicolas, would they mutate and cause bone or something else to grow in his brain? We asked literally everyone about stem cell therapy and did a great deal of research. Specialists and friends were horrified; not enough research had been done to risk therapy. The period before the final decision to try stem cell therapy was very difficult. There is an enormous amount of pressure on parents of handicapped children. But what finally helped us make a decision was that none of the specialists could rule out the possibility of improvement and that according to the independent physicians, no other risks – aside from the risk of surgery – were anticipated and that the chances of successful treatment were especially good for children. Nicolas could not wait 10 years for more research to be done.

Stereotactic brain surgery
In January 2009, Nicolas was underwent stereotactic brain surgery. MRI, PET, and CTG scans were used to determine which areas of the brain were most severely affected and the stem cells were to be injected there. In the operation lasting some five hours, four holes were drilled into Nicolas’ skull. After surgery, Nicolas vomited several times and obviously had headaches, which were brought under control by the proper medication. But after two or three days, it was clear that he felt better; he was just a bit fatigued. Overall, he came through surgery and the short hospitalization rather well and with no complications. We felt that he received good care and the intensive consulting and support from Professor Haberland were reassuring.

Results
After just a few days, we had the feeling that Nicolas could see better; he drooled less and was generally more alert.

“he is now training to stand with support”His speech/articulation and his cognitive skills appeared improved. In the meantime, three months later, the spasticity in his hands has decreased significantly. Nicolas does more with his hands than before, reaches for his spoon and tries to put it into his mouth, reaches for toys that we hold out to him, or smiles at us and is proud of himself. He is now training to stand with support, can briefly maintain a four-footed stand. His sitting is clearly improved; he will most likely be able to sit alone soon. We are especially happy that his attention is increasing as well as his desire to participate intensively in our life. We asked neutral persons, his pediatrician and his therapists, for their opinion; they all confirmed a pronounced improvement. Nicolas is still a severely handicapped child and has good and bad days, but he is making very good progress for his circumstances.

On adult, autologous stem cell therapy
We understand very well how difficult it is for parents to have to make such a decision for their child, especially as stem cell therapy is criticized so much and detailed, objective information is difficult to come by. But we believe that we made the right decision for Nicolas. The speed at which he is developing today is astonishing.


Patient story of Iarina Muresan, 2 years, Stroke

Year of birth: 2006
Disease treated: Stroke
As told by Iarina´s parents Ioana and Lucian Muresan

How it happened: Massive stroke at birth
“Iarina experienced a development explosion” Our daughter, Iarina, has suffered a massive stroke sometimes around birth, with very serious consequences: secondary epilepsy, severe motor retardation, hemiparesis on her right side. Iarina was experiencing 50-60 epileptic seizures daily (possibly more), even though she was taking antiepileptic medicine. Her right foot and especially her right hand were very affected. Iarina was not even able to open her right fist to pick up a toy. When she was 1 year and two months old, she was not able to sit up on her own; she could turn over on her side only with great difficulty. During the night we had to turn her from one side to the other so that she would not remain in the same position for 8-9 hours. During the day, she was happy enough to remain sitting in a baby chair for 2 hours or more. But even more frightening for us as parents was the fact that Iarina was not trying to speak at all, although we constantly encouraged her. We could only hope that she understood us. We do not need to describe how upset we were as parents, knowing that the chances for improvement for our daughter were minimal or even non-existent.

Stem cell treatment in Cologne
With these feelings we arrived X-Cell Center, two devastated parents searching for a miracle! We had the wonderful opportunity to see Dr. Angy Etou to whom we explained our situation. She carefully examined our daughter and studied her MRI images. She patiently listened to all the details concerning Iarinas case and decided to proceed with the stem cell transplantation. The stem cells were extracted from Irina´s hip and were re-injected into her spine. Fortunately, there were no side effects related to the anesthesia or to the transplantation procedure. Right after the treatment one good thing after another occured.

The results: A development explosion
Subsequently Iarina experienced a development explosion. Three weeks after the stem cell transplantation we noticed that the number of her seizures decreased, which was also confirmed by a neurologist and an EEG. After introducing another drug, her seizures gradually disappeared. A month and a half after the treatment Iarina began to say “mama” and “papa” (papa means food in our language). After that, there followed other words (like “ups, “goanga”-meaning little bug, “dei”-some sort of “give me”). At present, she understands absolutely everything we tell her and she interacts with us in a perfectly normal fashion. Two months after the treatment Iarina was able to turn over in bed by herself and change into whatever position she preferred. At night, when we put her to bed on her stomach she immediately rolled over on her back. If she wanted to get a toy, she could easily roll over towards it. Four and half months after the treatment she succeeded in sitting up by herself. Now she does this routinely. Eight months have passed since the transplantation. Now Iarina is able to stand on her own and when we hold one of her hands she walks around the whole house. She can even take up to 15 – 20 steps all by herself. Due to the stem cell therapy, her daily physiotherapy exercises are showing great results.

Today
At present Iarina still exhibits a delay in her development, her motor functions are still affected and she is under epileptic medication, however this transplant has given us more than we could have ever hoped for. It has given us more than just minor improvements; it has given us our child back! Finally Iarina is a child, not just a tortured soul strapped in a car seat!


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