Meet Henry 💛
Henry is the kind of kid who brings energy, humor, and light wherever he goes. He’s funny, kind, and full of personality, and he works incredibly hard every day in ways most people never have to think about.
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Barth syndrome is part of his story, but it does not define him. He is thriving in so many ways, and we are endlessly proud of him. Sometimes what people see doesn’t tell the full story. They see Henry laughing, joking, and showing up fully in the world, and we love those moments deeply. What they don’t see are the quiet calculations in the background: the energy it takes to get through a full day, the monitoring, the planning, and the awareness that comes with living with a rare disease. Both are true. And both are part of Henry’s story. |
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When everything changed
When Henry was a baby, we received a diagnosis we had never heard of. We quickly learned that it is an ultra-rare and life-threatening genetic disorder affecting the heart, muscles, immune system, and growth. At the time, there were no approved treatments, only uncertainty.
Overnight, our world shifted.
Like so many rare disease families, we were thrown into a reality of hospital stays and visits, unknowns, and learning to navigate something most people have never heard of.
Overnight, our world shifted.
Like so many rare disease families, we were thrown into a reality of hospital stays and visits, unknowns, and learning to navigate something most people have never heard of.
Living with Barth syndrome
Barth syndrome impacts nearly every part of daily life.
It can mean fatigue that doesn’t go away, challenges with strength and endurance, and a constant need to monitor health closely. It means navigating risks that others don’t have to think about.
And yet...Henry shows up every day with resilience and determination.
Our lives look different, but they are also filled with deep gratitude, perspective, and joy.
It can mean fatigue that doesn’t go away, challenges with strength and endurance, and a constant need to monitor health closely. It means navigating risks that others don’t have to think about.
And yet...Henry shows up every day with resilience and determination.
Our lives look different, but they are also filled with deep gratitude, perspective, and joy.
Why we started Happy Heart
Happy Heart began as a way to turn something overwhelming into something hopeful.
We wanted to do something; to raise awareness, to support research, and to connect with others who cared. What started small has grown into a powerful community. Together, we’ve raised significant funds for the Barth Syndrome Foundation and helped shine a light on a condition that was once almost invisible. And we are constantly overwhelmed with gratitude for our community!
We wanted to do something; to raise awareness, to support research, and to connect with others who cared. What started small has grown into a powerful community. Together, we’ve raised significant funds for the Barth Syndrome Foundation and helped shine a light on a condition that was once almost invisible. And we are constantly overwhelmed with gratitude for our community!
A moment we never thought we’d see
In 2025, we experienced something we once weren’t sure we would ever see. After years of uncertainty, advocacy, and relentless work from researchers and families, the first-ever treatment for Barth syndrome received FDA accelerated approval. For the first time since Henry was diagnosed, there was something more than hope in the abstract. There was something real.
I remember what it felt like to hear that news. Immense relief, yes. Gratitude, absolutely. But more than anything, it was the realization that Henry’s future might look different than we had once been told.
For so long, every decision, every plan, every quiet moment carried the weight of the unknown. And suddenly, there was a shift. Not an ending, but a turning point.
I remember what it felt like to hear that news. Immense relief, yes. Gratitude, absolutely. But more than anything, it was the realization that Henry’s future might look different than we had once been told.
For so long, every decision, every plan, every quiet moment carried the weight of the unknown. And suddenly, there was a shift. Not an ending, but a turning point.
But we’re not done
That progress exists because of a small, determined community that refused to accept “nothing can be done.” Families, scientists, advocates--people who kept pushing forward, even when the path was uncertain.
While we are thrilled to finally have an option, this isn’t the finish line.
That treatment still needs full approval to ensure access for every family who needs it. And one treatment isn’t enough for a complex, life-threatening disease like Barth syndrome. And so, we keep going.
While we are thrilled to finally have an option, this isn’t the finish line.
That treatment still needs full approval to ensure access for every family who needs it. And one treatment isn’t enough for a complex, life-threatening disease like Barth syndrome. And so, we keep going.
Be part of Henry’s story
When you support Happy Heart Week, you are helping write the next chapter, not just for Henry, but for families around the world facing Barth syndrome. Your support fuels research, strengthens community, and creates real progress.
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Henry did a special video that was featured at the Happy Heart Party, Sept. 2025. We are so proud of this young man, and continue to be in awe of his bravery, wisdom, and perspective on life. What a gift he is to this world! |
Join us in raising awareness of Barth syndrome and raising the necessary funds to ensure that all affected by Barth syndrome can thrive.
Thank you for being part of this journey 💛