When my grandson William was diagnosed with Duchenne muscular dystrophy, I went through weeks of agony, trying to process the reality of it all. The words “muscular dystrophy” felt like a punch to the stomach. I expected doctors and organizations to guide me through what would come next — to tell me what to expect, what to look out for, how to care for him, and if there were any treatments or therapies available. But nobody gave me that information. It was all left to me to figure out. I started searching the internet, trying to find any kind of clinical trial or treatment that might help. I was overwhelmed by endless medical terms and options, unsure of what was right for William.
What I found was a major problem: with William’s exon 62 duplication, most clinical trials weren’t even an option. I searched everywhere, sent countless emails, desperate to find something that could make a difference. But all I found were doors that slammed shut because William didn’t fit the right criteria. There seemed to be no hope. As I dug deeper into the world of Duchenne muscular dystrophy, I realized how little I actually knew about the disease and how it was affecting my grandson.
Finding hope for William
Then something caught my eye — an article about Elevidys, a gene therapy treatment. Unlike the other trials, this one was different — it offered more than just a temporary solution. It gave me a glimmer of hope, something I hadn’t felt in weeks. I dived into researching it, watching videos, reading about results and seeing children who had benefited from it. I saw children running, jumping, showing improvements — even if the muscle degeneration wasn’t fully stopped, it was slowed. I thought, this is it. This is the chance I’ve been looking for.
I started searching for the best hospital in the world for this treatment — and that’s how I found Boston Children’s Hospital. I didn’t know how to even begin, but I opened their website and started looking through application forms. At first, it was confusing; for the most part, they weren’t designed for children from abroad. I ended up submitting William’s name on one form that wasn’t meant for international patients, and they asked for an insurance number I couldn’t provide. I knew I’d done it wrong.
So I tried again. This time I found another section and filled out what I could, but it still didn’t go through properly. I decided to ring them directly. A kind person on the line guided me step-by-step through the correct process. Finally, we completed the proper application.
They told me once everything was submitted, they’d send William’s case to the DMD team in Boston for review. I waited, heart pounding, for about four or five hours. I was terrified. If the answer was no, I knew that was it. That the hope I had clung to might be gone.
Finally, the email arrived. William was eligible for treatment in the USA. I burst into tears. For the first time since his diagnosis, I felt a spark of hope light up inside me.
But then I saw the price.
Three point two million USD for the infusion. 0.5 million USD with aftercare. My heart sank. That’s what stood between William and the treatment that could change his life.
For a moment, I thought it had to be a mistake. How could this be real? How could the life of a child be priced at that amount? It felt like an impossible mountain to climb. How could I ever raise such an amount? How could anyone?
I spent countless hours trying to understand every aspect of this treatment, hoping for a solution, for a way to make it work. The more I researched, the more I realized how little control I had over this situation. This was a battle I didn’t expect to be fighting — not only for my grandson’s life but for his future. It’s heartbreaking to think about the obstacles that stand in the way of giving him the care he deserves. I thought, for the love of a child, is this really the price we have to pay?
But no matter how overwhelming the cost was, I wasn’t going to give up. I couldn’t. I made a promise to myself: I would find a way to raise that money. I would work day and night, do whatever it takes, to save my grandson’s life. I was determined to fight for him.
Fighting for treatment
This isn’t just about saving his life; it’s about giving him a quality of life. Duchenne muscular dystrophy is a cruel disease. As William grows, the symptoms will worsen. He’s already started to show signs of this — like a fall he had yesterday. He couldn’t walk afterward, even though nothing was broken. His muscles are weakening, and it’s heartbreaking to watch.
But I won’t give up on him. No matter how much it costs, I will keep fighting.
The more I thought about it, the more I wondered: how can they put a price on a child’s life — how can they set it so high that it feels out of reach for so many families? The cost of this treatment for a child with Duchenne muscular dystrophy is inflated to the point that it’s almost impossible to raise that kind of money. Is that the system we live in now?
The price of a child’s life is set higher than most people could ever dream of affording. Is this really how it’s supposed to be?
It’s a difficult truth to face, but I refuse to accept it. I won’t stop fighting. I know that the road ahead is tough, but I have to believe that there’s a way. I have to believe that we can find a way to raise the money William needs together. I will fight for his life, his future, and his happiness, no matter what it takes.
Because of everything I’ve done — because of all the nights I stayed awake wondering how I would raise the money — I opened a GoFundMe campaign. However, the funds have accumulated very slowly, and it’s especially difficult in Ireland; William is only half-Irish. But I will not let this stop me. I will keep going. I will continue to fight for William’s future, no matter how long it takes.
And now, it’s time to fight the government and the Health Service Executive (HSE), Ireland’s healthcare system. I will get this treatment for William, no matter what. The fight is far from over, and I’ll do whatever it takes to make sure my grandson gets the care he deserves. This is my mission, and I will not back down.
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
