When Thomas was a baby he was slower at doing things, like sitting up on his own, walking, getting up from the floor (always held onto something) as a parent you do worry but you also just say to yourself he's just doing it his own way. As a toddler he fell a lot and had a constant egg on his head. The Health Visitor suggested a referral to the paediatrician.

The paediatrician said he didn't think there were any issues just developmental delay but that he'd do a blood test to rule out a few things. Thomas got the blood test, and we left the hospital thinking that was it but the next day we were asked to go back in as something had come up on the blood test. Sitting waiting on the results we had no idea our life was about to change forever. He started talking about CK levels which I had no idea about (meant to be under 200 I think, and Thomas's were 11,000) then he said the words Muscular Dystrophy and my whole world came crashing down around me. I knew what it was, one of my oldest friends has a cousin who has Muscular Dystrophy and I remember him as we were growing up and I knew it meant Thomas was facing a life in a wheelchair. Craig on the other hand hadn't heard of it before.

So, the next steps were genetic testing and muscle biopsy. Genetic testing showed that I was a carrier (great, my fault is what a mother thinks) and we were in for a surprise with the muscle biopsy - the muscle showed that it was producing dystrophin - this was the best news ever - we were jumping for joy as this meant (as we were told) that Thomas had Becker and not Duchenne. This meant Thomas could reach 40/50 without needing a wheelchair. The world wasn't crumbling so much anymore, and we got on with things.

However, the consultant was always concerned with Thomas's progress - we were told they'd never seen a boy with Becker or Duchenne as weak as Thomas at his age, so we asked for a referral for a 2nd opinion. The consultant we saw looked at him for all of 10 minutes and decided it was Duchenne.

Whatever its called it doesn't really matter. Thomas is struggling with this every day - when his friends go out to play and he can't keep up, when his friends are on bikes/scooters, and he can't ride a bike or scooter and doesn't have the energy to even try and keep up. When his friends are doing clubs like judo/karate, and he can't do it. When your child is always asking, why do all the bad things happen to me? You just want to take it away.