Cole was born 14 days after his due date by C-section and for the first 3 years everything was normal. He was really boisterous and a typical little boy who was into everything. We did notice that he had really muscular calves and always joked that he had footballers legs.
Cole started nursery and was really unsettled, his class teacher expressed her concerns and referred him to the Child Development Centre. During the assessment process Cole complained that his legs were tired and it hurt to walk, I took him to the local walk in centre and the doctor diagnosed him with being lazy and said that the pains were in his head so that I would carry him and not make him walk.
The Child Development Centre mentioned he had autistic traits but they thought there were other issues and referred us to lots of consultants.
Eventually after two years of tests and numerous hospital appointments with various specialists we saw a neuromuscular consultant who diagnosed Cole with Duchenne muscular dystrophy. He told us a little about the condition but we were unable to take in any information as we were totally devastated at learning that it was degenerative and life limiting. There is no cure and the condition is 100% fatal.
As we learned more about the condition and informed family, friends and school the whole situation was heartbreaking. To find out that your little boy would lose the use of his legs and arms and be paralysed from the neck down. That every muscle in his body, including his heart and lungs would be affected is still difficult to comprehend
Cole is now 14 years old, he's such a happy, caring boy and has so much empathy towards others. He has the most amazing sense of humour and can be very sarcastic at times.
His legs have grown weak and after a fall in May, where he suffered 3 compression fractures to his lumbar vertebrae, he now relies on a powered wheelchair to move around and is no longer able to walk.
Cole has weekly hydrotherapy sessions which help keep him active as the water fully supports his body. He takes daily steroids as well as preventative heart medication but there are no other treatments available for him despite all the trials that are being currently funded.
All we can do is hope that a treatment or cure can be found in time to save him and all the others that have Duchenne.