Will

Will

Age 2, Illinois

Meet Will. Will is a super happy 2-year-old twin. He’s the "youngest," born just two minutes after his sister. Will has a smile that will blow you away, and he loves to flash it at anyone who will return with a grin. He adores music of all kinds, the "hot dog song" from Mickey Mouse is his favorite. He recently learned to walk and now he won't stay still!

Wil was diagnosed with a congenital heart defect called Hypoplastic Right Heart Syndrome before he was born, and shortly after birth he needed a heart transplant to survive. He was 9 days old when he was placed on the transplant list and three weeks old when he received the gift of his new heart, an incredible miracle that his family is forever grateful for.

Will also has a GJ tube, has global development delay, and see therapists weekly for feeding, speech, OT and PT. For the rest of his life he will need to take anti-rejection medications. Will’s mother, Sarah says: “Will blew past his lifetime cap within the first year of his life. With a literal lifetime of cardiac check-ups, heart biopsies, and expensive medications ahead of him, protections for pre-existing conditions like his and the lifetime cap are critical to his well-being financially and medically. There is absolutely no way that we, or Will in the future as an adult, could afford his medical needs were the protection of the #ACA to disappear.”

Submitted by Sarah, Will’s mother.