This is Joshua. Myotubular Myopathy means that his movements are slow and deliberate, although he has excellent fine motor skills! He is unable to walk or even bear his weight and his tendons have tightened so much at the back of his ankle, even something as simple as straightening his leg needs working at. Joshua is 24 hour ventilated with breathing support, which he initiates all by himself. His biggest problem though is lack of strength in his cough and his inability to clear his secretions so he needs regular chest physio to keep his airways clear. Like most children with myotubular myopathy.
Joshua is still a speed demon in his chair and just can’t/won’t slow down no matter how many times he is told.
He just loves cars and gets this from his Dad. He loves Hot wheels, going to watch banger racing, and car shows, literallly anything to do with cars. He especially loves car games for his Playstation and his Wii.
His favourite animals are mice. He had two pet mice but they have both recently died. But he loves anything ‘mousey’ – he was even a mouse in the school Christmas production. I think the play must have been written for Joshua – he couldn’t believe his ears when the production was announced and it was called Squeak. One of the pictures I sent to you is Joshua dressed up for the play.
Age 10, Joshua is very well in himself. He is definitely stronger from a resistance point of view and doesn’t get half as many colds or chest infections as he used to do, and when he does, he seems to fight them off reasonably quickly. He is a very happy child. He loves having fun and and enjoys being daft and silly. He has a great sense of humour and often has us in stitches of laughter. He very rarely watches telly but would spend all day on the Playstation or Wii. When he does watch telly, he will only watch things that make him laugh – his favourites as the moment are Roadrunner and Wacky Races and his favourite films are Alvin and the Chipmunks and Speed Racer – oh and Top Gear, of course.
He is good at school, being above average in most subjects. He loves reading, particularly non-fiction books where he soaks up any bits of general knowledge. Science and Art are his favourite subjects.
Joshua is still 24hr ventilated and requires 4 hourly chest physio. He is gastrostomy fed, but over the last 12 months his oral drinking has improved, with him taking on monumental capacities. This just goes to show how MTM muscles can be developed. Joshua has been drinking orally for some time now, but it started off as tastes – really for stimulation and just to keep his mouth moist. Over time, the amounts he could drink, without aspirating, got bigger and bigger and as I say, over the last 12 months, he just improved dramatically. He can now drink as much as any other ‘normal’ child.