Our son Jimmy is 10 months old. Like any parents, we want him to grow up healthy and happy.
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.
