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Happy Heart Week: raising awareness of Barth syndrome—over a decade of hope and support

Happy Heart Week kicks off this week (May 6-13, 2024). The momentum and dedication shown by the community over the past decade propels the Branaghs toward a monumental milestone: crossing the $1,000,000 mark in total funds raised for the Barth Syndrome Foundation

Happy Heart Week started in 2013 on behalf of the Branagh family’s second son, Henry. When Henry’s family hosted the 1st Annual Happy Heart Walk at the Lafayette Reservoir for extended family and close friends, the purpose was to simply honor Henry and to promote awareness of pediatric cardiomyopathy, for at that time the family had a beautiful but very sick baby, and no diagnosis.

At three months of age, after very slow growth and a series of tests, Henry was admitted to Children’s Hospital Oakland for failure to thrive. Within 24 hours of being admitted, the family learned that Henry was in serious heart failure. He had a confirmed diagnosis of severe dilated cardiomyopathy, meaning that the left ventricle of his heart was extremely enlarged.

Henry and his family spent the next five weeks in the pediatric ICU trying to get Henry’s heart function stable. He was eventually able to come home on oral medication but continued having twice weekly cardio checkups for the next year and was referred to the Heart Transplant Team at Stanford Lucile Packard Children’s Hospital.

Even though Henry’s heart function was stable, he was still in heart failure, and many other facets of his life were very difficult. Just before his first birthday, the family received results back from genetic testing that revealed why Henry still had dilated cardiomyopathy and why it still had not healed. He has a very rare genetic disorder called Barth syndrome. This condition, primarily affecting males, is characterized by cardiomyopathy, neutropenia, muscle weakness, exercise intolerance, growth delay, and extreme fatigue.

While this diagnosis came with an onslaught of more unanswered questions and mounds of fear for the Branagh family, it surprisingly brought a tremendous amount of peace. The Branaghs were relieved to have a known reason for Henry’s challenges, and they were fueled to fight, for there is no approved treatment or cure for Barth syndrome. YET.

What started as a simple gathering of family and close friends to raise awareness around an unknown genetic heart condition has turned into a national campaign bringing awareness and hundreds of thousands of dollars to theBarth Syndrome Foundation,the only worldwide organization dedicated to saving lives through education, advances in treatments and finding a cure for Barth syndrome.

While the format of Happy Heart Week has shifted over the years from an in-person walk to a virtual week-long event, the premise has remained constant—to celebrate Henry’s birthday and the gift of his life, to honour others affected, to bring awareness around an ultra-rare disease that is underdiagnosed, and to raise funds to end the suffering caused by Barth syndrome.

Each year, Happy Heart Week has grown exponentially in supporters and in funds raised. Hundreds of people have now heard about a disease they otherwise might not have, and a total of $871,000 has been sent to the Barth Syndrome Foundation through the Branagh family’s efforts in this campaign. This special week is now a much-anticipated event in the community, and people all over the country look forward to purchasing the newest color and style of HAPPY shirts.

From humble beginnings in 2013 to the remarkable achievements of recent years, Happy Heart Week has not only provided vital support to those affected by Barth syndrome but has also shone a beacon of hope and awareness on a condition that many did not know about.

To follow along, contribute to Happy Heart Week, or grab some great HAPPY gear,

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