When progress feels slow, the right place and people can make all the difference.
It’s been a year since my grandson William was diagnosed with Duchenne muscular dystrophy (DMD). William and I recently spent two weeks at a rehabilitation center in the Czech Republic, where our family has ties. Each day, there were four to five hours of focused work — a mix of physiotherapy and neurofeedback.
It wasn’t easy for him, or for anyone involved. William is bright, funny and endlessly curious, but also strong-willed. When he decides he won’t listen, no one can change his mind. His concentration wavers quickly. I know part of it comes from his environment at home, where there isn’t much talking or engagement. Still, he is as clever and social as any child could be. Everyone at the center saw that within minutes.
Read more about William’s journey
On the first day, the physiotherapist evaluated him. I warned that William could be hyper, but he just smiled and said, “He’ll be fine.” By the end of that session, he understood what I meant — William worked him into a sweat. But the next day, something softened. William began to cooperate and trust. By the third day, they were friends, moving through each exercise together.
The results were precise. His heels began to drop closer to the ground, and for the first time in a long while, he could press his feet fully down. He still needs reminders, but the progress is real. I learned that the right setting, patience and persistence can do more than I ever expected.
Not long after returning home to Ireland, we had our follow-up appointment in Dublin — another check to see how Duchenne was progressing. Those visits are always hard. The doctors observe, measure and compare. They tell me what’s changing in his muscles and what to expect next. It’s difficult to hear, but I try to stay grounded and focus on what can still be done — how to keep William as strong and mobile as possible.
What we’re facing now
The current battle is constipation — something that sounds simple, but for William, it is a real ordeal. It causes pain, fatigue and frustration. The medications haven’t worked as we had hoped. When the pain becomes too much, he blurts out things like, “There’s bread, a sausage, a soup!” It sounds funny, but it’s really his way of coping with discomfort.
The issue isn’t diet or food choices. Everything there is fine. The problem lies in the muscles themselves.
Duchenne weakens the abdominal muscles that help the intestines move. When those muscles lose their strength, the body struggles to push things along naturally. It’s a mechanical issue, not a dietary one. So now the doctors are searching for the right approach — something that genuinely helps, not just temporary comfort.
The Achilles’ heel
Another focus is his Achilles tendons. Since his first steps, William has always walked on his tiptoes, and over time the tendons shortened. The Dublin specialists suggested surgery to release them, but I’m not convinced it’s the right choice. Sometimes an operation can take away more than it gives.
Thanks to consistent physiotherapy and the dedicated rehabilitation team in the Czech Republic, William has made real progress — he can now place his feet entirely on the ground. That small detail feels like a huge victory. My goal is to maintain this improvement for as long as possible, supporting his body naturally through movement and therapy rather than resorting to surgery.
The rehabilitation team recently sent comprehensive reports to William’s doctors in Ireland. They read them carefully and were particularly interested in the type of neurofeedback therapy his rehabilitation team uses. I’ve been asked to share more details about it, which is encouraging — it shows that William’s progress is being taken seriously.
Staying ready for the future
While I manage the day-to-day challenges, I also keep an eye on the future. I’m in contact with several research centers in the United States, exploring possible clinical trials for William. These studies represent real hope — access to emerging treatments that could slow the progression of Duchenne or improve muscle function.
But clinical trials come with strict criteria. To qualify, William needs to stay as strong and mobile as possible. For example, he must be able to stand up from lying on his back in under seven seconds and walk a distance of 100 meters (over 300 feet) without support. These are small numbers on paper but enormous goals in real life. Every stretch, every exercise, every step counts. Keeping him in the best physical condition isn’t just about today’s comfort — it’s about preserving his eligibility for tomorrow’s opportunities.
That’s why our daily routines matter so much. Physiotherapy, swimming, massage, stretching, balanced nutrition — they all build the bridge between where he is now and where science might meet him next. I can’t control the timing of medical breakthroughs, but I can make sure he’s ready when the moment comes.
Looking ahead
Our next journey will take us to Belgium, where we’ll meet one of the world’s foremost experts on DMD. His research into new therapies and clinical trials brings hope to families worldwide.
From that meeting, I expect guidance, up-to-date knowledge and maybe a clearer direction for William’s care.
Holding on to hope
Each day brings its own mix of effort and reward. Some mornings begin with medical forms and end with laughter over something silly William says. Even in the middle of appointments and exercises, he finds ways to make me smile.
William is brave, witty and determined. His willpower could move mountains, and his humor keeps me grounded. I’m doing everything I can so he can keep growing, laughing and living a life that feels his own.
Hope doesn’t erase the complex parts, but it does give them meaning. And in the end, that’s what keeps me going — knowing that every day I fight for his strength, for science and for the simple joy of another day with William’s smile.
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