Henry’s birthday is May 2nd. He is turning TWELVE! 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 12th birthday, we are going to celebrate his beautiful life, his challenges with Barth syndrome, the other boys and men suffering from this disease and their families, and the great work the Barth Syndrome Foundation is currently doing, just like we have done for so many years now. The virtual celebration will happen Monday May 6th through Monday May 13th. Through an email and social media campaign, we are hoping to raise awareness around this disease and raise important funds for the Barth Syndrome Foundation so that they can keep working towards a treatment or cure, of which there is currently NONE.

While tremendous strides have been made, we are not there yet. Your support and donations are critical in helping us get to the finish line! Thank you for coming alongside us on this journey, cheering Henry on as he thrives and struggles, and making a difference in our lives and the lives of others affected by this difficult disease.

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