Turning love into actionHappy Heart began with our son, Henry.
When Henry was a baby, he was diagnosed with Barth syndrome, an ultra-rare, life-threatening genetic disorder we had never heard of. In an instant, our world shifted. We were thrown into a reality filled with uncertainty, questions, and very few answers. There were no approved treatments. No clear roadmap. Just a deep desire to do something. Where it all beganThe first Happy Heart event was a walk around the Lafayette Reservoir in 2013. It was simple--just a way to bring together family and friends, raise awareness, and feel a little less alone in something that felt overwhelmingly isolating.
We didn’t know what it would become. We just knew we needed to take a step forward. And people showed up. |
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The meaning behind “Happy Heart”
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The name “Happy Heart” comes from a proverb a dear friend shared with me when Henry was first in the hospital in 2012 with severe heart failure:
“A happy heart makes the face cheerful…” Proverbs 15:13 At a time when everything felt uncertain, those words stayed with us. For our family, “Happy Heart” has come to mean something deeper. Even though Henry’s heart has been physically sick, his joy has remained steady. Not because of our circumstances, but because of the strength and hope we’ve been given through the Lord. It’s a reminder we return to often; that joy isn’t something we have to wait for until things are easier. It can exist right in the middle of the hard. Our hope is that Henry’s story encourages others to hold onto that kind of joy, to keep going when it’s difficult, and to find light even in uncertain moments. |
Growing into something bigger
What started as a small walk continued to grow year after year. It became a virtual campaign, expanding beyond our local community and connecting people across the country, and eventually around the world. It grew into in-person celebrations that brought people together in powerful, joyful ways.
And along the way, something incredible happened: a community formed.
Together, that community, Happy Heart, has raised over $1.3 million to support the Barth Syndrome Foundation--funding research, supporting families, and helping move critical work forward. We are so proud of this community!
And along the way, something incredible happened: a community formed.
Together, that community, Happy Heart, has raised over $1.3 million to support the Barth Syndrome Foundation--funding research, supporting families, and helping move critical work forward. We are so proud of this community!
Happy Heart began with one simple idea: that even in the face of something rare and overwhelming, people can come together to create real change. What started as a way to support families affected by Barth syndrome has grown into a community rooted in connection, action, and hope. It’s a place where awareness turns into advocacy, and where small moments--showing up, giving back, spreading the word--add up to something much bigger.
At its core, Happy Heart is about bringing people in. Not just to learn about Barth syndrome, but to be part of the progress. Because meaningful change doesn’t happen in isolation—it happens when a community decides that “rare” doesn’t mean forgotten.
Henry once said in an interview that he wished, just for one day, to feel normal. That simple hope is what drives this work forward.
Happy Heart exists to keep that momentum going. Because this work is not just about one moment or one breakthrough. It’s about continuing forward, together, until every person with Barth syndrome has the opportunity not just to live, but to truly thrive.
At its core, Happy Heart is about bringing people in. Not just to learn about Barth syndrome, but to be part of the progress. Because meaningful change doesn’t happen in isolation—it happens when a community decides that “rare” doesn’t mean forgotten.
Henry once said in an interview that he wished, just for one day, to feel normal. That simple hope is what drives this work forward.
Happy Heart exists to keep that momentum going. Because this work is not just about one moment or one breakthrough. It’s about continuing forward, together, until every person with Barth syndrome has the opportunity not just to live, but to truly thrive.
What Happy Heart is today |
Why it matters |
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Today, Happy Heart is an annual virtual week of awareness and fundraising held each May in honor of Henry’s birthday. While the format has evolved over the years, the purpose has remained the same: to turn love into action and to keep moving progress forward.
It is a space to:
What began as something deeply personal has become something truly collective. |
When you are part of a patient population this small—about 300 individuals worldwide—every effort matters.
Every conversation. Every donation. Every person who chooses to care. Happy Heart exists to make sure this community is seen, supported, and moving forward. |
Join us
Whether you have been part of Happy Heart from the beginning or are just finding us now, we are so grateful you are here.
There are many ways to be part of this:
Together, we are building something bigger than one family.
We are building hope.
There are many ways to be part of this:
- Donate to support research and families
- Become a sponsor of Happy Heart Week
- Share this story with others
Together, we are building something bigger than one family.
We are building hope.
With deep gratitude from our family, and the entire Barth syndrome community 💛
