Jimmy is one in a million.

Our son is ten months old. He has Barth syndrome, which fewer than three hundred people in the world are living with today.

Its rarity is why research is slow, and why most doctors never see a case in their lifetime. That's why the Barth Syndrome Foundation connects families, clinicians, and scientists to work together to understand it and eventually cure it.

And we need your help to make it succeed.

Give through Alexis's Giving Tuesday 2026 page

Jimmy swaddled in green, held against a shoulder

Jimmy in an incubator under a phototherapy blanket

Jimmy asleep in his parent’s arms in hospital

Jimmy on his play mat, surrounded by hanging toys

Jimmy and his family at the Barth Syndrome Conference

Jimmy bundled up in a cranial helmet, looking at the camera

Jimmy in his helmet, finger in his mouth, wide awake

Why we are asking

Jimmy has Barth syndrome, a rare genetic disease that mostly affects boys. It weakens the heart, the muscles and the immune system. Only a few hundred people in the world are known to have it, and there is no cure yet.

As parents, all we want is to keep him safe and give him a full life. We worry about every fever and every checkup, and we think a lot about what his future will look like. We can’t change this on our own.

This year’s Giving Tuesday theme for the Barth Syndrome Foundation is the power of connection. When a disease is this rare, the families, doctors and scientists who understand it are spread all over the world. BSF is what brings them together. For families like ours, that means we don’t have to face this alone.

Your gift to the Barth Syndrome Foundation supports research, resources and programs that make a difference for our children and families. Any amount helps, and sharing this page helps too.

Thank you for helping Jimmy and kids like him. It means the world to us.

— Alexis Chan, mom of Jimmy

One line, one thread. When a disease is this rare, the families who live with it and the people trying to cure it are scattered across the world — and what the foundation really does is hold the thread between them.

Where it stands

Every gift made through this page counts toward Alexis's own goal, and toward the Barth Syndrome Foundation's campaign total.

$200toward the Barth Syndrome Foundation's $135,000

Any amount helps, and so does sharing this

Donations are handled by Givebutter on behalf of the Barth Syndrome Foundation. You will land on Alexis's page with the gift already directed to Where BSF Needs My Donation Most.