Family Stories - Adam

Family stories from the Myotubular Trust

"This is our son Adam aged 16. Adam has X-Linked Myotubular Myopathy and is currently fully mobile, though he does experience extreme fatigue. Adam is due to Start College in September this year to study computer engineering dependant on his GCSE grades. We feel very lucky that Adam appears to be mildly affected and has remained quite independent. Adam does not really enjoy doing physical activities and prefers to spend time on his computer. In the nicer weather he will ride his bike or go for a little walk, he also enjoys fishing. Adam has always been very resilient and does not let anything get in his way. We remain very proud of Adam and the things he has achieved and wish him lots of luck for his GCSE results, lots of love Mum, Dad and Becky xxx"