On May 3, my grandson William tripped and fell — something that happens often for him. He’s four and a half and lives with Duchenne muscular dystrophy (DMD), so falling is part of his everyday experience. But this time, something felt different.
He stood up using only his right leg and refused to place his left foot on the ground. It wasn’t out of pain — he didn’t cry. It was more like his foot had suddenly stopped responding. What really struck us was how his left foot began to twist inward in an unfamiliar way, something we had never seen before. It made walking impossible.
Searching for help, and finding silence
We took him to the emergency room straight away. They did an X-ray, which came back clear. I told the doctors that William has Duchenne muscular dystrophy. I explained that maybe the issue wasn’t a broken bone, but something connected to his muscle condition. But they didn’t react. No one there had heard of DMD. They didn’t research it, didn’t ask for more details, didn’t offer any suggestions. We waited for eight hours and left with no explanation — just a suggestion to let William rest his leg.
When he still wasn’t walking four days later, I started to panic. I contacted the DMD team in Dublin, William’s physiotherapist, and returned to the hospital. Another X-ray. Another long wait — this time 12 hours. Again, no one knew what Duchenne muscular dystrophy was. And again, no one offered a follow-up, a second opinion, or even a phone number for someone who might be able to help.
That was when it really hit me. The fall itself wasn’t the scariest part. The silence around it was. As a family affected by a rare disease, you expect challenges. But to be in a hospital, surrounded by professionals, and still feel completely alone in figuring out what to do — that’s something no family should go through.
In the days that followed, everything seemed to come to a pause. William had been using night splints regularly before the fall, but now we couldn’t get his left foot into the splint at all. We tried warm baths, distraction, stretching — but it didn’t help. His foot had tightened so much, we couldn’t slide it into the splint. He spent two weeks without walking, without splints, and without physiotherapy. And no one followed up.
Eventually, someone suggested we try putting the splints on while he was sleeping. And that worked. When he was relaxed, we could ease his foot into position again. But it took two weeks before anyone thought to mention that.
Two weeks lost — when every day matters.
And then came another problem. Without the ability to walk, William couldn’t go back to preschool due to insurance policies. But no one contacted us to explain what we could do or how to help him return — not the school, not the therapists, not the system. He didn’t even have a wheelchair yet, and no one advised us on how to get one. There were no instructions. No referrals. Nothing.
So I did what I had to do: I made the calls. I emailed. I followed every lead I could think of. Eventually, we got an appointment to have William measured for a wheelchair and arranged a temporary loaner so he could return to school while we wait for his own. But again — it only happened because we made it happen. If I hadn’t spoken up, William would still be at home, waiting.
This is what caregivers often don’t say out loud: so many things fall on us. Coordinating care, pushing for answers, managing paperwork and organizing transport. And while we do it out of love, the emotional weight is enormous. In those weeks, I felt like I was acting as his advocate, therapist, scheduler and protector — all while watching him lose his mobility.
Eventually, after three and a half weeks, just before they decided he could return to preschool, William began to walk again. It was slow and different. His gait had changed. His left leg was weaker. The progress we had seen before the fall had slipped away. But at least he was moving again.
Then came a moment that broke my heart in a different way.
On June 16th, William was invited to try a wheelchair during a fitting appointment. It wasn’t his yet—we were just checking if it would suit him and if he could manage it. He climbed into the chair, moved himself around a little, and started laughing. He was so happy. It was the first time in weeks that he had been able to move without help.
And I cried.
Not because he was in a wheelchair, but because he needed one. He’s four and a half. Most kids that age are running, climbing, bouncing off walls. But here was William, finally free again — not by walking, but by rolling. He wasn’t upset. He was excited. But I felt the grief of what Duchenne keeps taking, bit by bit.
Finding a new rhythm
We’re still waiting for his own chair to arrive. In the meantime, he can walk about 300 meters (just under 1,000 feet) before I have to carry him. After a few minutes of rest, he can go again. This is our new rhythm — one burst of energy at a time, followed by rest and patience.
The good news is that William is getting stronger again. He has become more talkative, more expressive, and more curious. In some ways, the developmental delays we worried about seem to be easing. But physically, there’s no doubt that something shifted during that fall, and it left a lasting impact.
What I want to say to other families is this: trust your instincts. If something feels wrong, speak.
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