I am walking in honor of my son, who was born with Hypoplastic Left Heart Syndrome. The entire left side of his heart was too small to sustain his life. We learned of his condition while he was still in the womb and traveled to Boston Children’s Hospital, where doctors performed an in‑utero balloon valvuloplasty to open his aortic arch.

Although the procedure was experimental at the time and not completely successful, it still made a meaningful difference and helped him in important ways after birth.

At 5 days old, he underwent a procedure called the Norwood procedure. On the 6th day, he had a stomach repair due to a tear caused by a weighted feeding tube. At 3 months old, he underwent the Glenn procedure because the patch on the aortic arch was rejecting and causing issues. At 4 years old, he had his last open surgery called the Fontan. During this surgery, he suffered two watershed strokes on both sides of his brain.

Mason has had to relearn how to sit up, walk, and use his fine motor skills all over again. The balloon valvuloplasty helped because, other than his major surgeries, Mason has never had to spend another day in the hospital. His left side of the heart, although small, still contributes in a small way.

It is for these reasons that we walk to raise funds for research for CHD. Every advancement improves the outcomes of children born with CHDs. We strive for each of these kids to reach adulthood and live life just as anyone else does.

What is also important to understand is that most often these surgeries are not once and done. This is lifelong medical care. For my son, the next step would be a heart transplant. We hope this is far off in his future and that new technology will make transplants less hard on the body and eliminate the need for anti-rejection medications.

We also walk because funding for these kind of reserach is serverly underfunded.  Each dollar matters regardless if the it small or big.