BiographyAlexander was born a healthy baby.
When he wasn't walking or making chatty noises and not reaching the usual milestones, as he baby sister was born when he was around two she was doing more than he was at the similar age, we knew something wasn't right. We spoke to our health visitor about our worries that he wasn't developing in the same way his sister was.
We thought that it was autism, we went to lots if speech and language therapy at the local hospital and then we got an appointment to see a paediatric doctor who took blood tests. Then unfortunately his grandmother died due to cancer and a month later his little sister also died a month after her funeral. We had an appointment about his blood test results and he was diagnosed with Duchenne muscular dystrophy and his and our lives changed dramatically as his life expectancy is in his 20s. We were all devastated. We now have regular appointments at Great Ormond Street Hospital. Around 3 years ago, Alexander stopped walking as he found it painful to keep walking. He attends a special needs school which he has done since around 4 and a half. He also has to use a cough assist machine as he has lost a lot of muscle strength and is unable to cough and this muscle loss has to continued to effect his upper body. He also finds lots of difficulty in playing with his toys he does adapt but many times he just needs help from both me and his dad .
|
