Ways to help
As a toddler, Thomas 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 test. Sitting waiting on the results we had no idea our life was about to change forever.
The paediatrician started talking about Thomas's abnormal CK levels, which I had no idea about, 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. I remember him as we were growing up and I knew it meant Thomas was facing a life in a wheelchair. My husband Craig, on the other hand, hadn't heard of it before.
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. Then 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 that Thomas had Becker, not Duchenne, and could reach 40 or 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 second opinion. The consultant we saw looked at him for all of 10 minutes and decided it was Duchenne.
Whatever it’s 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 or scooters, and he can't ride one and doesn't have the energy to even try and keep up. When his friends are doing clubs like judo or 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.
So we are hoping that by setting up Team Thomas we can raise awareness. That you might tell someone about this boy with Duchenne. That's how we generate funds and then someday there may be a cure and my little boy might not spend the rest of his life in a wheelchair (from around age nine or 11), lose the use of his arms and possibly die at a very young age from heart failure.
It's the most heartbreaking thing for a parent to know what lies ahead for their child. Duchenne is fatal, there is no cure. There’s research, but not enough and it’s not progressing fast enough. So hopefully as Team Thomas we can try and make a difference.
Team Thomas was set up by Thomas's parents, Laura and Craig. Net proceeds will be split 80% for research into Duchenne muscular dystrophy and 20% for the family's welfare.