2023 Happy Heart Week
Henry’s birthday is May 2nd. He turned ELEVEN! Birthdays are always such a sweet celebration. But even more to us now, birthdays remind us in a very literal way of our gratefulness for each breath everyday and our time together here on earth. For Henry’s 11th birthday, we are going to celebrate his beautiful life, the other boys and men suffering from this disease, and the great work the Barth Syndrome Foundation is currently doing, just like we have done for so many years now.
Happy Heart Week started 11 years ago in honor of our second son, Henry. He was born with an ultra-rare, life-threatening, mitochondrial disease called Barth syndrome. He spent his first few years of life very sick in heart failure, and his future was unknown. In an effort to bring awareness around this rare disease, we hosted the first annual Happy Heart Walk. While the details of this event have shifted over the years, the purpose has remained the same - to bring our community together for the greater good of others, specifically those affected by Barth syndrome.
Thank you for your support of our family and the Barth Syndrome Foundation, the only organization in the world dedicated to finding a treatment or cure for this deadly disease, of which there is currently NONE. Your gift puts us one step closer!
Join the celebration by making a donation here, subscribing to our email list, and sharing our posts on social media (facebook, instagram). It all makes a difference!
*All proceeds from Happy Heart Week benefit Barth Syndrome Foundation (501c3) and are tax deductible.
*To learn more about Happy Heart Week, visit happyheartweek.com