My grandson William is five and a half years old. He is curious, talkative and full of determination. Like most children his age, he wants to do whatever the other children are doing. If they climb, he wants to climb. If they run, he wants to run. His eagerness to participate is one of the things that makes him who he is.
It is also the reason we must be careful.
William lives with Duchenne muscular dystrophy (DMD), a genetic condition that causes progressive muscle weakness. To most people, he looks like any other child his age. He walks, runs, plays and laughs with the same enthusiasm as his peers. But beneath that energy, his muscles are working harder, and they tire more quickly.
William is naturally trusting. When he meets someone new, he often offers his hand. Holding someone’s hand helps him feel secure. People like him immediately, and he gives his trust just as easily. Each day, I try to balance letting him explore the world with understanding when his body needs rest.
One day, he will ask why he cannot move like other children. I am afraid of that moment. For now, we live in the time before that question — protecting his strength and his joy.
Physiotherapy, massage and subtle daily changes
After spending time at a physiotherapy center in the Czech Republic, William showed visible improvement in how he stands and walks. Sometimes he can place both feet flat on the ground — something he could not previously do. It is not yet consistent, and his left side remains more affected, but with reminders and stretching, he tries his best.
At home, he wears orthoses and splints, and he attends physiotherapy twice a week, including sessions in water to reduce strain on his muscles. We also do regular massage. When I massage him, I feel changes that others might not notice. His muscles do not feel the same as before; their shape is different, and they seem less even.
His left leg — the one with the shortened Achilles tendon — looks slightly thicker. I do not know the exact reason, but the difference is clear when I hold, stretch or massage him. These small physical signs remind me that Duchenne is always in the background, even when he seems strong.
Our main goal is simple: keep him moving. Every improvement — even a small change in posture or flexibility — helps him stay independent for longer.
Achilles Tendon, orthopedics and a hard decision
William has walked on his toes since he first began walking. Over time, this caused his left Achilles tendon to shorten, lifting his heel off the ground.
Doctors in Dublin first suggested surgery, but I did not feel it was right for him. Later, an orthopedic specialist agreed that surgery should not be done now. Instead, they recommended serial casting — a gradual stretching process.
The plan involves placing his foot in a hard cast positioned closer to a neutral angle. The cast stays on for a week. Then it is removed, his progress is checked and a new cast is applied. This cycle would continue every week for about six weeks, with the goal of slowly lengthening the tendon.
We have an upcoming appointment to discuss it again.
I am not comfortable with this approach. William once fell and became so frightened that he stopped walking for weeks. If the cast limits his movement or makes him afraid to put weight on his leg, he might lose the confidence he has worked so hard to build. Emotional safety matters just as much as physical correction.
Because of physiotherapy and his time at the physiotherapy center, William can now sometimes place his foot fully on the ground. To me, that is significant progress. I want to protect that rather than risking a setback.
Constipation and daily discomfort
One of William’s most persistent daily challenges has been constipation. It brings pain, fatigue and fear of going to the toilet. This is not only about food — Duchenne affects the muscles in the digestive tract, making bowel movements more difficult.
When he feels discomfort, William presses his hands against his lower stomach, trying to hold the pain inside. He has done this since he was younger, and still does. I see it as his way of coping and trying to control something that feels frightening or unpredictable.
With medication, patience and gentle encouragement, things have improved. He now usually goes to the toilet every second or third day. Before, it was often five days or more. This progress has made a noticeable difference in his mood, comfort and willingness to move.
Where we are now
For now, William is stable. He walks, runs and plays like other children, though he sometimes complains about his left ankle. We keep him active but are careful not to push him too far.
We are supported by a specialist in Belgium who understands Duchenne deeply and follows emerging treatments closely. Their guidance gives us reassurance and direction in a world filled with uncertainty.
I hope that future therapies, including gene therapies, will one day transform the lives of children with Duchenne. Until then, our focus is simple: to help him move, to keep him comfortable and to let him enjoy being a child.
This journey is not easy, but we are not alone. Families around the world live this story in their own way. For now, we continue — one day at a time — supporting William’s strength and holding on to hope.
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