At the moment he can walk – but only on his tip toes as the muscles in his legs and feet are so tight that his feet are literally scrunched up. He falls over quite a lot and is covered in bruises but is an incredibly positive plucky little chap with an amazing can-do attitude. However, without surgery he will by age 8 be permanently wheel-chair bound for the rest of his life, with all the consequences that go with that. The extreme muscle tension in his legs is such that it is bending his legs out of the alignment needed for walking.It does not have to be this way.
There is a potentially life-changing surgical procedure that is available to children with his type of cerebral palsy. It is conducted by a very small number of surgeons worldwide and is not available on the NHS. The procedure is called SDR which stands for selective dorsal rhizotomy. Basically, it involves cutting some of the sensory nerve fibres that come from the muscles and enter the spinal cord. The nerves are electrically stimulated until the surgeons find the ones that cause the spasticity and these are then cut, permanently relieving the spasticity in the legs.Having SDR would truly be life changing for Sebastian and his family. There is a very good chance he would be able to walk, run, jump, and do almost all the things that other kids his age can do. He could even play football and ride a bike, things that - heartbreakingly - are currently unachievable for him.
His parents are trying to raise £75,000, via a charity called Tree of Hope, so that he can go to St Louis in America to see Dr Park, a leading SDR specialist, who has successfully changed the lives of over 3,000 children and young adults with CP, through successful SDR procedures. They have at the time of me writing this raised about £29,000.The younger a child is when they have this operation the better outcome they will have. For optimal results a child should have the operation before they are four years old.
It is for this reason that on Friday 31 October at 2.30 am I am going to get out of bed and cycle – possibly in near freezing conditions – in one day from Morecombe to Bridlington – a distance of about 160 miles.This is your chance to make a really massive difference to the life of one small boy. I urge you to take it and sponsor me on this bike ride. Let’s do it.
Thank you for your support.Andrew