The Same Disease, Different Countries: What Duchenne Parents in America and Georgia Reveal About Access, Hope, and Time

By Daniel Mercer

“My son doesn’t like talking about the disease.”

The father smiled briefly as he said it. His son, now 13 years old, prefers movies, jokes, scooter rides, and the ordinary concerns of adolescence. Like many children living with Duchenne muscular dystrophy, he understands more about his condition than his parents sometimes realize, but the family has made a conscious effort not to allow the disease to dominate every conversation or define every aspect of his childhood.

Listening to him speak, it was difficult not to think of the many American parents who have shared remarkably similar stories. Across interviews, advocacy campaigns, and testimonies before regulators, families in the United States often describe children who want what all children want: independence, friendships, hobbies, and a future that feels larger than a medical diagnosis.

The similarities are striking. The differences are even more so.

Duchenne muscular dystrophy is a devastating genetic disease that progressively weakens muscles and gradually takes away abilities that most people take for granted. Regardless of nationality, language, or social class, parents confronted with a Duchenne diagnosis often describe the same emotional journey: confusion at the first symptoms, shock at the diagnosis, relentless research, and a growing awareness that time has suddenly become their most precious resource.

Yet while speaking with parents in Georgia and comparing their experiences with public testimonies from families in the United States, a fundamental distinction emerged. American families often find themselves fighting insurance companies, navigating complex healthcare systems, or advocating for broader access to newly approved therapies. Georgian families are fighting a different battle altogether. Many are still trying to persuade their government that these therapies should be made available in the first place.

The contrast is not merely political or economic. It shapes the way parents experience the disease itself.

In public testimonies across the United States, parents frequently speak about the urgency of access. They describe the frustration of paperwork, prior authorizations, coverage disputes, and regulatory delays. Underlying those complaints is an assumption that treatments exist and that the challenge is obtaining them. The conversation revolves around access, timing, eligibility, and affordability.

The Georgian parents I spoke with described a reality that begins one step earlier. Their struggle is not only about access but about recognition. For more than a year, they have organized demonstrations, met with officials, engaged religious leaders, spoken with international organizations, and taken their case directly to the public. Their objective is straightforward: convince policymakers that children living with Duchenne deserve access to treatments already approved elsewhere.

One father repeatedly returned to the same idea. Every week matters. Every month matters. Duchenne is a progressive disease, and progression does not pause while governments deliberate.

“We don’t have much time,” he said. “The clock is ticking.”

It is a sentiment that would sound familiar to families in the United States. American parents have made similar arguments before regulators for years, emphasizing that the consequences of delay cannot be measured solely through clinical data. A year in the life of a healthy child is significant. A year in the life of a child with Duchenne can be transformative. It may represent the difference between walking and not walking, between climbing stairs independently and needing assistance, between maintaining a function and losing it forever.

What stood out in the Georgian interviews was the degree to which parents felt compelled to defend the value of those years. Several described public discussions in which policymakers questioned whether extending mobility or preserving function for a limited period justified the cost of treatment. To the parents, the framing itself felt deeply disconnected from the realities of living with the disease.

From a budgetary perspective, an additional year of mobility may appear as a modest clinical outcome. From a family’s perspective, it can mean another year of independence, another year of attending school under more ordinary circumstances, another year of participating in daily life without additional limitations. The difference between those two perspectives lies at the heart of many Duchenne debates around the world.

American families have confronted similar tensions, particularly during discussions about emerging therapies and their costs. Yet the interviews suggest that the dispute often unfolds differently. In the United States, disagreements tend to focus on reimbursement, coverage, and regulatory standards. In Georgia, parents are still debating a more fundamental question: whether the healthcare system should provide access at all.

Perhaps the most powerful moment of the conversation came when one father described a family with two children affected by Duchenne who now live under different circumstances. According to him, one child resides in the United States and has received treatment, while the other remains in Georgia. The family believes the difference between the two children has become increasingly visible.

Whether that comparison could be quantified scientifically is almost beside the point. For parents watching their children grow up, the emotional impact is undeniable. The story captures a troubling reality of modern medicine: advances in treatment have created new possibilities, but access to those possibilities remains profoundly unequal. In many cases, geography can shape a child’s future almost as much as biology.

Another striking similarity between American and Georgian families is the way Duchenne transforms parents into advocates. Few mothers and fathers begin this journey expecting to become experts in regulatory policy, healthcare systems, clinical trials, or public affairs. Yet many eventually do. American advocacy organizations have spent decades building networks of parents who testify before agencies, participate in research discussions, and help shape policy. Georgian families have followed a remarkably similar path, although under very different circumstances. They organize marches, conduct media interviews, negotiate with officials, and mobilize public support, all while continuing to care for children with a life-altering disease.

In the process, many discover that advocacy becomes an extension of parenting itself.

The father of the 13-year-old boy acknowledged that public exposure initially placed enormous strain on his family. Television interviews, demonstrations, meetings, and media requests became part of daily life. Over time, however, his family came to view visibility not as a burden but as a necessity. Public attention, they concluded, was one of the few tools available to accelerate change.

That conclusion echoes a broader lesson visible across the Duchenne community. Whether in America, Georgia, or elsewhere, progress has rarely occurred because families remained silent. Advances in awareness, research, funding, and treatment have often been driven by parents unwilling to accept that nothing could be done.

For all the differences between the two countries, the most important commonality may be hope. The American parents who push for access to new therapies and the Georgian parents who march through the streets of Tbilisi are motivated by the same belief: that time gained matters, that function preserved matters, and that children living with Duchenne deserve every possible opportunity to live fuller and longer lives.

Their circumstances may differ, but their message is remarkably consistent. They are not asking for certainty, because certainty rarely exists in medicine. They are asking for a chance.

And for families living with Duchenne, a chance is often measured not in years, but in moments that everyone else takes for granted.