HHW2018 Facts...

FACT: One of the life-threatening characteristics of Barth Syndrome is cardiomyopathy. Cardiomyopathy is a chronic disease of the heart muscle (myocardium), in which the muscle is abnormally enlarged, thickened, and/or stiffened. The weakened heart muscle loses the ability to pump blood effectively, resulting in irregular heartbeats (arrhythmias) and possibly even heart failure. The only surgery to correct this is a heart transplant, and even then, every other cells in the body is still affected by the mutation associated with Barth Syndrome. It was Henry’s cardiomyopathy that ultimately landed him in the PICU, and that lead to his diagnosis of Barth Syndrome, made through a genetic cardiomyopathy blood panel. He continues to take maximum therapeutic doses of 4 serious heart medications and several supplements twice daily to maintain stability of his heart function. #HHW2018 #BarthSyndrome

Last week, at Henry’s open house, we had the privilege of seeing a project (we hadn’t even heard they had done this!) in which his teacher had asked each kid what their favorite part of their body was and then had them describe why. From hair to feet, and everything in between graced the wall. Henry had chosen his heart. See his sweet words below as to why. #HHW2018 ​