The story of Susan Searle
Our son, Ciaran, was born on the 28th October 2005, much wanted, and a week early by emergency cesarean. I knew the risk of Down’s Syndrome because of my age, but we wanted him regardless – after all, what’s a learning difficulty – nothing we couldn’t handle.handle as time went on and he took some time to talk and walk, we weren’t unduly worried. I discovered he had and clicky hip and nd andndftwr seeing a consultant orthopaedic surgeon, he had to have an operation on both hips in September 2012. It was a traumatic time for cilia, but more do for Ciaran who refused to eat in hospital and he left hospital in a type of spica cast, quite skeletal and we struggled to get him to eat properly and he has not had a great relationship with food since. He did get on his feet again, but his walking was never quite right. He walked with a gait that reminded me of an orangutan. His walking became so unsteady that he had a walking frame. I took him back to his paediatric consultant wh referred us to Neurology. We got the terrible news in June 2014 that he had Duchennes Muscular Dystrophy. He was 8 years old. By October he was in a wheelchair. He is generally a very happy chap and is non-verbal. He has no idea he has that horrible disease and I thank God that he doesn’t. We have no idea how long he will be with us as the dual diagnosis is very rare. But we try to make him as comfortable and as happy as we can. He loves his ipad and particularly YouTube. He loves school and swimming. I am so glad he is in our life but it has been a struggle and still is.