We're a relentless force! Now imagine how much stronger we'll be working as a team! Heart disease is still the no. 1 killer and stroke ranks no. 5 in our nation. Team Full of Hope walks not just for those fighting aquired heart disease, but also those fighting congential heart disease. Congenital Heart Defects (CHDs) occur in about 1 in 110 births. My son Asher, was born in 2019 with a complex CHD called Hypoplastic Left Heart Syndrome (HLHS). In hypoplastic left heart syndrome (HLHS), the heart's left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped. In Asher's case, he has aortic and mitral atresia, meaning both his aorta and mitral valve were completey shut. His left ventricle stopped puming sometime before 22 weeks gestation. 

Like most CHDs, there is no cure. Currently, there is palliative care in the form of three open heart surgeries that take place about one week of life, 5 months of life, and 3 years of life. Asher has had all 3 of these palliative surgeries and is the happiest little boy. Asher just turned five and will start kindergarten in the fall. Neither of those things were promised to us when he was born and both are a miracle to our family.

Despite how well Asher is doing, funding for CHD remains extremly limited. There is no plan for HLHS kids after the third surgery except to hope for the best. There are often secondary diagnoses that come along as well. For Asher this has included a paralyzed vocal cord, leading to a feeding tube, along with Chronic Kidney Disease. Asher is in speech, feeding, and occupational therapy. He fights everyday to do things most of us take for granted. On top of that, not even the smartest of doctors or surgeons can tell us how long Asher's heart will hold out. The three surgeries bought him precious time, but the surgeries also ask his heart to do something it was never meant to do. It is most likely at some point in his life Asher will face a heart transplant, which is far from a cure.