Meet Our Boys and Young Men

The magnetism of these boys and young men is undeniable. Numerous articles have featured the heroic stories of their journeys. If you have been one of the lucky people who know or have met a child or young man with Barth syndrome, you know how incredibly special they are. Although Barth syndrome causes them to endure many debilitating conditions such as heart disease, arrhythmias, neutropenia, and extreme fatigue, these extraordinary individuals are recognized for their intelligence, wit, and gentle nature.

Click on names to learn more about them!

Featured Story

When Isaiah was born in November 2012, I knew becoming a mother would change my life, but I had no idea just how much this little boy would impact me. From the very beginning, Isaiah was a good baby: he ate well, slept well, and fussed very little. Not only was he a good baby, he was also a very healthy baby; each time I would take Isaiah to the doctor for his checkups, he would measure on the small side of the spectrum, but he was growing consistently and he was thriving. Life seemed to be off to a wonderful start for my new family, and we were excited to watch our little boy grow and learn new things. Read more...

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