William is my grandson — a joyful, curious and resilient little boy. His laughter fills our home, and his love for Minnie and Mickey Mouse is unmatched. He finds happiness in the smallest things — whether it’s lining up his toys, watching cartoons or simply being surrounded by people who love him. His spirit is strong, and his smile is a daily reminder of why we keep going.
Behind that smile is a journey that challenges us every day. William lives with Duchenne muscular dystrophy (DMD), a condition that slowly weakens his muscles. We first received the diagnosis through a blood test, and while it confirmed what we feared, it didn’t come with the full support we expected. No scans, no cardiac checks, no baseline assessments — just a name and a prescription. There was no roadmap, no guidance, and no real understanding of how far the disease had already progressed.
Since then, I’ve had to step into a role I never imagined: not just a grandmother, but a caregiver, coordinator and advocate. I’ve watched William’s body change in ways that are hard to describe. His arms and legs, once smooth and strong, have become more rounded and uneven. His left calf is visibly weaker. He’s lost weight, his appetite has declined and his behavior has shifted. These aren’t just symptoms — they’re signals that something deeper is happening.
We’ve had moments that shook us. One day, while trimming his toenails, I saw his big toe turn blue. Another time, he was so constipated he cried and pointed to his heart. His pulse was racing — 155 beats per minute. These moments are terrifying, and they remind me how fragile his body can be, even when his spirit is so full of life.
Fighting for my grandson
We’ve traveled long distances for short appointments. In March, we drove three hours to Dublin for a scoliosis check. The doctor looked at William for three minutes, didn’t even touch him, and said he was fine. No scans, no questions. We drove four hours home, exhausted and disheartened. It’s hard to accept that after such effort, we’re left with more questions than answers.
In May, William stopped walking for three weeks. I emailed the hospital. Their reply? “Thank you for informing us.” No urgency. No follow-up. By August, I was still waiting for the June check-up they had promised. They offered November. I pushed back and got Oct. 6. DMD can progress rapidly; knowing damage might be happening as we wait for an appointment is something we live with every day.
So, I took matters into my own hands. I arranged for William to be evaluated in the Czech Republic, where our family has ties. There we could get the tests he should have had from the beginning.
I can’t fight every battle with the system, but I can fight for my grandson. I can make sure he’s seen, heard and cared for — even if it means crossing borders to do so.
Despite everything, William continues to shine. He plays, he laughs, he learns. We celebrate every small victory — taking a few steps, managing a bowel movement, or simply enjoying his favorite Minnie and Mickey Mouse toys. These moments are our fuel. They remind us that joy still lives here, even in the midst of uncertainty.
I work closely with his physiotherapist, who is one of the few consistent supports we have. Together, we monitor his progress, adjust his routines and try to keep him as independent as possible. It’s not easy. It’s exhausting. But it’s necessary. Every stretch, every step, every moment of movement matters.
Children like William are more than their diagnosis
As a grandmother, I carry a unique kind of love. It’s fierce, protective and deeply emotional. I want William to have the freedom to play, to explore, to grow. I want him to be surrounded by care that sees him not just as a diagnosis, but as a child with dreams, feelings and a future. I want the world to understand that behind every medical term is a family doing everything they can to hold things together.
William’s journey is not just about a diagnosis — it’s about living with it. It’s about adapting, advocating and loving fiercely. It’s about finding joy in the everyday, even when the future feels uncertain. It’s about showing up, even when the system doesn’t.
We are part of a wider community of families who face similar challenges, and I carry deep respect for every parent, grandparent and caregiver walking this path. Our children — and grandchildren — deserve to be seen, heard and supported in every way possible. Not just medically, but emotionally and humanely. I hope William’s story reminds others that even in the face of uncertainty, love, persistence and small victories can carry us forward. I will never give up searching for new gene therapies, treatments or clinical trials. I will always fight for his life.
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