Like many 9 years olds, Sam loves football and playing for his school team! He’s also a Young Seagull and really enjoys going to the Amex Stadium to watch Brighton play. Like all fans he loves the noise and the buzz of the stadium – the louder the better! Unlike others, however, Sam has CDKL-5, a very rare genetic disorder which manifests in uncontrollable epilepsy. Only 300 boys in the world are diagnosed with CDKL-5. It means that Sam is severely disabled and needs one-to-one care at all times. He may have up to 30 seizures in a day and is unable to walk, talk or sit on his own. He relies on a wheelchair, but this does not stop his enjoyment of football and he has a chair nimble enough to be pushed around the pitch and score goals. He’s one of the team’s top scorers!
Sam and his family’s lives have been transformed thanks to a special Sussex-based charity, Chailey Heritage Foundation. Chailey Heritage School is one of the world-class services offered by Chailey Heritage Foundation for children and young people with complex disabilities. It has been educating young people with disabilities for over a hundred years. Every year, it works with young people and their families, to give them the best that life can give, no matter what challenges they face.
What makes Chailey Heritage School so special is the expert care that it can provide in partnership with Chailey Clinical Services whilst at the same time setting educational targets. Staff are able to cope with Sam’s epilepsy, deal with his personal care needs while also developing each child to the maximum of their potential. All the while, specialist therapists and engineers are on hand to aid each child and adapt specialist equipment to suite each individual need. This would simply not be possible in main stream education. Vicki, Sam’s mum, says:
“Up to the age of 5, he spent a lot of time in and out of hospital. I gave up work to care for Sam full time, but once he was settled in at Chailey, we knew he was completely safe at school, that he would be well looked after, and kept busy with lots of different activities such as swimming, riding a trike and horse riding.”
The individually-tailored curriculum each child follows at Chailey Heritage School has enabled Sam to develop skills his parents thought would be impossible, including eye pointing as a method of communication:
“Because of the work that Chailey is doing, our son has been opened up to us - before, we had no way of communicating with Sam whatsoever. But now he can express himself by using a thumbs-up sign to tell us if he is happy and even make choices of what to watch on TV with his sisters.”