Beau O'Hagan
On September 26, 2019, our world became brighter when our beautiful son, Beau O’Hagan, entered it. He was strong, happy, and met every milestone in his first year of life. We had no reason to suspect that anything was wrong.
But just after his first birthday, we noticed a hand tremor. Then, he began to lose his gross motor skills. We voiced our concerns, only to be dismissed by doctors—told it was all in our heads. I was eight months pregnant with our second child when a doctor looked at us and said, "Just enjoy Beau before another child comes into the picture."
We didn't stop fighting. But by the time doctors finally listened, by the time they finally chose to run the test, Beau had already lost his mobility.
This story might seem heartbreaking and used to knock me on the ground when I’d reflect on it, and in many ways, it is. But what happened next changed our lives forever.
When the Medical System Failed, Our Community Showed Up
When doctors didn’t hear our words, our community did.
Friends, family, and even strangers rallied around us. They helped raise funds, offered support, and ensured we had the resources to take our next steps. In the darkest of moments, we found light in the people who refused to let us go through this alone.
We were introduced to Cure SMA and the incredible SMA community. Connecting with these families—these warriors—reminded us that we were not alone.
There was a time when advocating for treatment, accessibility, and care made us feel isolated. But through the digital world we live in, through the incredible humans who have tirelessly shared their own stories, we felt a connection. We realized we could do this—not just for Beau, but for his younger brother, Rory, too.
A Future We Never Stop Fighting For
Beau has been part of two different clinical trials—a journey that required strength, courage, and an unwavering belief in hope. And today, at five years old, Beau is thriving. This is a testament to the community that fought and rallied before us with far less resources who teach us and guide us moving forward.
Beau attends a forest and nature school, where he explores, learns, and grows every day. He plays basketball, lacrosse, and sledge hockey. He loves art, music, and all things innovative and technology. Whatever Beau does, he throws himself into it fully, with joy and determination.
SMA has changed our lives, but it has also taught us what truly matters.
It has shown us that connection is everything. That we are stronger together. And that every single moment is worth celebrating.
We wouldn’t wish this diagnosis on anyone. But we are grateful for the perspective it has given us. We see the world differently now. We show up differently. And because of Beau, we shine a different light than we ever knew we had.
We are honored to have Beau recognized at this year’s Rebecca Run for SMA, a community that continues to uplift, fight, and celebrate every single victory—big or small.
Thank you for showing up. Thank you for standing with families like ours. And thank you for believing, as we do, that hope is stronger than anything SMA can take away.
But just after his first birthday, we noticed a hand tremor. Then, he began to lose his gross motor skills. We voiced our concerns, only to be dismissed by doctors—told it was all in our heads. I was eight months pregnant with our second child when a doctor looked at us and said, "Just enjoy Beau before another child comes into the picture."
We didn't stop fighting. But by the time doctors finally listened, by the time they finally chose to run the test, Beau had already lost his mobility.
This story might seem heartbreaking and used to knock me on the ground when I’d reflect on it, and in many ways, it is. But what happened next changed our lives forever.
When the Medical System Failed, Our Community Showed Up
When doctors didn’t hear our words, our community did.
Friends, family, and even strangers rallied around us. They helped raise funds, offered support, and ensured we had the resources to take our next steps. In the darkest of moments, we found light in the people who refused to let us go through this alone.
We were introduced to Cure SMA and the incredible SMA community. Connecting with these families—these warriors—reminded us that we were not alone.
There was a time when advocating for treatment, accessibility, and care made us feel isolated. But through the digital world we live in, through the incredible humans who have tirelessly shared their own stories, we felt a connection. We realized we could do this—not just for Beau, but for his younger brother, Rory, too.
A Future We Never Stop Fighting For
Beau has been part of two different clinical trials—a journey that required strength, courage, and an unwavering belief in hope. And today, at five years old, Beau is thriving. This is a testament to the community that fought and rallied before us with far less resources who teach us and guide us moving forward.
Beau attends a forest and nature school, where he explores, learns, and grows every day. He plays basketball, lacrosse, and sledge hockey. He loves art, music, and all things innovative and technology. Whatever Beau does, he throws himself into it fully, with joy and determination.
SMA has changed our lives, but it has also taught us what truly matters.
It has shown us that connection is everything. That we are stronger together. And that every single moment is worth celebrating.
We wouldn’t wish this diagnosis on anyone. But we are grateful for the perspective it has given us. We see the world differently now. We show up differently. And because of Beau, we shine a different light than we ever knew we had.
We are honored to have Beau recognized at this year’s Rebecca Run for SMA, a community that continues to uplift, fight, and celebrate every single victory—big or small.
Thank you for showing up. Thank you for standing with families like ours. And thank you for believing, as we do, that hope is stronger than anything SMA can take away.
