Happy Heart Week

Happy Heart Week is an annual awareness and fundraising drive for Barth syndrome celebrating Henry’s birthday. He is 6 years old May 2nd. Birthdays are always a big milestone, but in Henry’s case, birthdays are an extra sweet marker of life that we have not always been certain of. Help us celebrate Henry’s life, all of the other boys and men that have been and are affected by Barth syndrome, and their families and friends that  fight for them daily hoping for a treatment or cure. Thank you so very much!! 

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