Home: Dorset, United Kingdom
Update after 2nd Treatment in Nov 2010
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 the XCell-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 2 days of physiotherapy he started to walk again! Absolutely amazing…”
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 the XCell-Center and the ISST, 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 to the ISST 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, the XCell-Center and the ISST have 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 the XCell-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 the XCell-Center and ISST from the bottom of our hearts. Without them I couldn’t tell you where we would be right now! If you are considering treatment at the XCell-Center, think about what you have just read. They can also give your family hope.
Hope that OK.
Let me know if you need anything else!!!
And we will try to come see you in April……….
Backgound 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.
“…All I can say is, “Thank God we found you!”
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 and became friendly with Mirja who answered all my questions. The details were passed to the consultant who researched this disease and decided to take Jacob on as a patient even though they 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.
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.
To learn more about Jacob’s progress, please visit http://www.smile4jacob.co.uk Donations for Jacob’s second stem cell treatment and ongoing care can be made there.