LAMORINDA WEEKLY | Happy Hearts Walk for Henry


Henry Branagh, 22 months, is all smiles ahead of the second annual Happy Heart walk in his honor. The walk supports those affected with Barth Syndrome. Henry was diagnosed with the syndrome at age 3 months. Photo Cathy Dausman

Henry Branagh, age 22 months, is all heart; perhaps more so than he should be. The lively Lamorinda toddler has severe dilated cardiomyopathy, an enlarged left ventricle, due to Barth Syndrome (www.barthsyndrome.org), but you wouldn't know it to look at him, especially since his nasal feeding tube has been removed.

Barth Syndrome is a rare genetic disorder affecting more boys than girls; it is marked by enlarged heart, low white blood cell count, muscle weakness, and energy deficiency. Henry was just 3 months old when he was diagnosed at the onset of what became a five-week stay in the Pediatric Intensive Care Unit at Children's Hospital Oakland.

He was hospitalized again before his first birthday.

Shortly after, his mother organized a Happy Heart Walk around Lafayette Reservoir "to honor Henry and to promote awareness of Pediatric Cardiomyopathy." The Happy Heart term was coined when Branagh's best friend from Texas sent words of encouragement, and referenced a biblical passage: "A happy heart makes the face cheerful ..." (Proverbs 15:13).

Megan Branagh hosted a second walk Feb. 22. This time nearly 150 participants donned matching red T-shirts to hike the Reservoir trail, before enjoying a sausage, hot dog, fruit and cupcake lunch - some of Henry's favorite food. The walk itself was free - "we pre-sold T-shirts," Branagh explained, but the family encouraged donations to Barth Syndrome Foundation.

"We had great support from local businesses (Peet's Coffee, Susie Cakes, Lafayette Carwash, Boswell's Party Supplies and Whole Foods, all in Lafayette, plus East Bay Screenprint, Concord, and Gianna's Baking Company, Castroville)," she said. And the outreach has expanded.

This year a group of eight families, Branagh friends from Ft. Worth, Texas, wore the same T-shirts and walked in solidarity with the Lafayette contingent. Also joining the Reservoir group was the family of a young Alameda teen, the only other Bay Area child the Branaghs know with a Barth Syndrome diagnosis.

"The past year and half has been quite a journey, definitely the most trying time in our lives, but also a time of feeling very loved and supported by our family, friends, and community," Branagh said. "We're very thankful."