Hello,
My name’s Michelle, and I want to start off by simply saying a huge thank you! When my little boy, Henry, was diagnosed with a rare muscle-wasting condition, your kind support of Muscular Dystrophy UK (MDUK) meant my family had somewhere to turn for answers, for help, and for hope. Without that, we would’ve been lost.
Before Henry’s diagnosis, my husband, Keith, and I were actually more concerned about some of his challenging behaviour. We had no idea it might be a physical condition until the paediatrician we were referred to suggested genetic testing and the results came back. I have to say, I’d honestly never heard of Becker muscular dystrophy. Apparently, doctors can go their whole careers without ever coming across it!
We were told some pretty devastating things at the time, such as Henry’s possible life expectancy, his muscles getting weaker, breathing and heart problems, him needing a wheelchair… things like that. It was a lot to take in. In that moment, you’re desperately trying to process all this new information, but at the same time millions of thoughts are racing through your head. What’s my little Henry going to go through? How can we help him? Are there any treatments or cures on the horizon? And then, when you search on the internet, some of the prognoses you find are quite extreme and sort of the worst-case scenario. We were in a very lonely, frightening place.
That’s where MDUK made such a life-changing difference, and it’s why I can’t thank them, and you, enough. They gave us information, people to speak to, and put us in touch with families who had boys of Henry’s age with the same condition. It’s all been invaluable in helping us know what to do and what might be ahead.
The physical impact of Henry’s condition can be quite hard sometimes. His four-year-old brother, Elliot, can do things Henry can't, or might get things straight away, when it takes Henry a lot more time and effort. He also gets upset that he can't keep up with his friends, like when his muscles spasm and tense up from over exertion and he has to rest. That’s quite difficult for him. It happened once when I collected him from an after-school football club. He was walking in from the field and I could see he’d stiffened up. I picked him up and he burst into tears. He just felt like this solid thing in my arms. It was heart-breaking.
At the moment, we’re teaching Henry that it doesn't matter if someone can do something a bit better physically, because he’s really creative and amazing with his drawing and his art, which he absolutely loves.
We’ve obviously had to tell him about his condition, but only what’s suitable for his age. Already though, we can see he’s starting to push himself. At the park a few months back, he decided to go down a bigger slide than he’s ever done before. So, we think he’s challenging himself to see what he can and can’t do.
Another big thing for him is how Becker muscular dystrophy affects his brain and his understanding of things. Not much is known about this at the moment, so I was delighted to hear that there is currently an international study analysing the brain impacts of Duchenne and Becker muscular dystrophies. It’s great to see serious research being done into an area like this that’s absolutely vital to understand.
Overall, where we are now feels a million miles away from the worry and confusion of his diagnosis. MDUK has provided everything from information and advice to practical help and signposting to other services. We now know that, as Henry’s condition progresses, it might not necessarily be a worst-case scenario. And if it is, we know that MDUK will pull us and Henry through. And with them funding research into so many different conditions, it feels like there’s hope for the future too; not just for Henry, but everyone with a muscle-wasting condition. Please, will you give a special Christmas gift now and spread that hope and support to even more families?
If you can give a gift of £10 today, you could help fund the care, support and information team, ensuring people who are facing a muscle-wasting diagnosis have access to the practical information and emotional help, like peer support, that’s been so essential for Henry’s family.
A larger donation of £25, could help support MDUK’s advocacy service, so their expert staff can help families like mine access the financial support and assistive equipment they’re entitled to, and which could prove vital as their needs change.
With an especially generous gift of £50, you could help pay for world-class research into muscle-wasting and weakening conditions, bringing us all closer to a world with faster diagnoses and accessible treatments for all neuromuscular conditions.
I know there are families who’ll receive their diagnosis in the future, sitting in a room in a paediatric ward as the consultant tells them their child has a condition they’ve never heard of. I’d love them to know that help is available, from a charity staffed by the most amazing and dedicated people, many of whom are directly affected by muscular dystrophy themselves. Once they find MDUK, and the support of its community, things become so much more hopeful. It already feels like a second family to us.
For my part, I’ve recently signed up as a peer support volunteer to help other families like mine, and to be honest, I’m not sure I want to imagine a scenario where we don't have MDUK in our lives. For helping them be there for my family and so many others, thank you. Your support has been life changing.
I wish you and your loved ones a wonderful Christmas. Whatever you’re able to give, it’ll make my whole family’s Christmas too.
Yours, with love and gratitude,
Michelle Robson,
Henry's mum
