Research into Duchenne muscular dystrophy (DMD) is completely underfunded. There is currently no cure. Ryan was diagnosed with DMD on his 4th birthday. His mum, Zoeann, shares his story.
I’m a mum of 3 wonderful children – Molly, Dylan and Ryan. The kids and I share an incredibly close bond. We do so much together and talk about everything. We don’t care where we are, laughing is something you’ll always find us doing. As a family, we are always planning trips away together, to theme parks or different countries, to have fun and make special memories.
Ryan, my youngest, is the quieter soul of the family. But when he laughs, he lights up the room. He’s an incredibly loving boy and really enjoys reading and dancing.
We all tell each other how much we love one another at least 10 times a day, and there aren’t enough hours to match the cuddles we have. We laugh because, as a family, we face great challenges.
Duchenne muscular dystrophy
When Ryan was 2 years old, I noticed that he wasn’t reaching his key milestones – his walking and speech seemed to be delayed. I arranged to see our local GP to see if anything was wrong. The doctors originally said that they didn’t see any issues, but call it ‘a mother’s intuition’, I sought a second opinion.
Ryan was diagnosed with DMD on his 4th Birthday.
I remember the moment well. I was with my family in a restaurant, getting ready for a little gathering we’d arranged for him, when the hospital called me. They said that something was very wrong and that we had to go in the following day.
Duchenne muscular dystrophy is, in my opinion, one of the worst childhood conditions. It took Ryan from a healthy little boy, with his whole future ahead of him – to slowly taking every faculty away from him. It’s frustrating and, at times, it can be soul destroying.
How do I fix this?
When I first received the news, my first thoughts were, ‘How do I fix this’ or ‘how do I make this go away’. I spent so many hours saying ‘take me instead, my baby is so innocent’. However, I was adamant that I didn’t want this disease to take the light away from my family. I didn’t want to give it that much power. But that has, at times, been harder than I’d ever imagined.
Since Ryan’s diagnosis, I’ve thrown myself into doing as much as possible. Ensuring that Ryan lives life to the max, while he’s still mobile and before those things that he takes for granted become harder, with his continued regression.
We’ve had to move to a larger house, so we can adapt home-life for Ryan’s growing needs, which has come with a huge financial burden. We’ve also been on a medical trial for almost four years now, which has meant lengthy trips down to London every week. This new routine has taken some getting used to and has seen big changes in how our family manages. As a result, our circle of friends has become smaller. So much time is taken up from the appointments, constant fighting to ensure Ryan has what he needs, as well as working full time to support the family. It’s exhausting.
Ryan knows he has DMD, but doesn’t know what it means for his future. He gets very frustrated being unable to do the things other children can do so easily. But largely, we try to offset that with other things we like to do, like going to the movies, playing computer games and lego. Despite all this, Ryan has just celebrated his 11th Birthday, and I can’t believe he is doing his SATs this year.
When I think of Ryan’s future, I am so scared. Hope only keeps things at bay for so long. I don’t want my son to be the next name on that list of children and young adults we’ve lost.
On the flip side to that, Ryan wants to go to university to become a scientist. He said that he ‘wants to develop something that will help other sick people’. We will do everything in our power to make that a reality.
My advice to parents with seriously ill children is to not look too far in the future. Love each day. Savour all the little things. Have more hugs. Spend more time cuddling when tucking them in at night. And when you feel ready, get up and fight with all you have for your child.
Research is vital
Research into Duchenne muscular dystrophy is so completely underfunded, as it’s a condition that people just don’t know enough about. That’s why Sparks-funded research to find the first effective stem-cell treatment to repair children’s muscles, is so vital.
There is no viable treatment for DMD. There is no cure. We simply can’t ‘fix it’ alone. It can happen to anyone, at any time. It’s one of the biggest genetic killers of children and it needs to stop. Putting an end to this can only happen through research. Research will lead to treatments and cures. It will give hope to more families and will ultimately save children’s lives. But we need your help to get there faster. Children with DMD don’t have a choice with what’s happening to them, but you have the power to transform their futures.
You can get involved and help raise money for Sparks Charity. Plus, join our Facebook, Twitter and Instagram communities to stay up-to-date with our work. Help us improve children’s lives forever, through the power of research – donate today.
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