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MARTEN'S PROGRESS

Marten's story and his struggle with cerebral palsy
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YOUR SON HAS 
CEREBRAL PALSY!


It was a day that shall remain fixed in our minds forever. The 13th December 2011, the day before Marten and Erik were due to celebrate their first birthdays. We had spent weeks trying to get a definitive answer to explain Marten’s ever increasing discomfort; his almost total inability to sleep at night, and his inconsolable crying. 


Looking back we had noticed Marten’s increasing sudden and jerky movements, we had watched as the gap between him and his brother grew wider, but we had put all of this down to the fact that he was both 3 months premature and was the donor baby in a condition in the womb called “twin to twin transfusion”. After all Marten had spent the first 5 months of his life in hospital; it was only natural that his development would be delayed - wasn't it?





     SPASTIC QUADRIPLEGIA

We have to confess before that time we had little knowledge of what cerebral palsy actually meant or the different degrees and effects the condition entailed. 


Cerebral palsy is brain damage caused by a lack of oxygen to the brain. It can occur before, during or after childbirth (normally before) and ranges from mild to very severe. It can affect both the motor system of the body and the intellectual capacity as well.


Marten we were told was at the severe end of the spectrum. His cerebral palsy meant that he did not have control of his legs, arms or head. In old-fashioned terminology Marten is classified as being spastic quadriplegic.






                 "TREATMENT"

Perhaps they were trying to shield us a bit from reality but we soon found out that the doctors had suspected cerebral palsy for a number of months. Even the answer to our first question “Would Marten be able to walk?” was sugar-coated.

 

We now know using the medical services currently available in this country there is absolutely no prospect of a child like Marten ever being able to walk. Indeed, given the severity of his condition it was highly unlikely that he would be able to sit properly or even support his own head.

 

Effectively, current medical practise would see Marten welded into a wheelchair for the rest of his life. What was on offer was a lifetime of drugs; painful surgery designed to mask some of the deformities which happen very quickly in the skeleton, and botox injections to try and kill the spastic movements in his arms and legs. Yes, the professionals would try and improve some of the “fine” motor function in his hands – but what’s the point in developing these finer finger functions when you cannot control your arm!





            THE ALTERNATIVE

Surely there had to be something better on offer.  After endless hours searching the internet, and dismissing numerous idiotic theories, we came across a programme called ABR (Advanced Biomechanical Rehabilitation), developed, and still being developed, by a Russian called Leonid Blyum.  With its remarkable videos, detailing the progress being made by severely handicapped children, this therapy provided us with some hope.

 

We tracked down the nearest functioning ABR centre (in Belgium) and made contact with a lady called Krista Bynens. In the space of a 10 minutes phone call she gave us more information and understanding about Marten’s condition than we had received to date. Krista’s son also has cerebral palsy and it turned out that one of the videos we had been watching was of him!







Marten pictured only 4 days before his 1st birthday - 3 days before we were given the news that he had cerebral palsy.







Marten and Erik on their first birthdays. As had become "normal" Erik was playing around while Marten could only lie and watch.













Marten receiving one of the ABR movements that we were taught. The wash cloth is stuffed with little bits of foam while the towel has several foam layers inside.













Marten with mum. Just 4 weeks into his ABR programme he was much more relaxed, sleeping at night and had come off supplementary oxygen.



Below you will find three videos from the ABR Belgium website. When you see the transformation in the lives of these children you will understand why we chose to pursue this alternative option. Forget the different languages you will hear – these videos need no explanation!