Isaac

Age 11, Virginia

Meet Isaac. Isaac is a cub scout, and master Mario Kart player. He loves to play outside and ride his scooter down hills at top speeds. He has an amazing sense of humor and keeps us everyone laughing.

Isaac was born at 31 weeks with Esophageal Atresia (a gap in his esophagus). He spent 8 of his first 11 months in the ICU, part of it in Virginia, part of it in Minnesota. During this time he was kept in a medically induced sleep for 3 months. In his first year, Isaac underwent 14 major surgeries. He received a trachoetomy as a result of paralyzed vocal cords, and a feeding tube for nutrition. He came home for the first time in his life at 13 months. Since then he has undergone several additional major surgeries - mostly out of state. He also has a titanium rod that runs down his back, the entire length of his ribcage that was used to force his ribs open and allow his right lung room to inflate fully.

Because Isaac has a tracheotomy, he has communication challenges and receives speech therapy both privately and in his neighborhood school which he is able to attend with assistance from a nurse. Having access to the care and support he needs means that Isaac can be educated with his friends and stay in the least restrictive environment.

Isaac's mom Kim says: "Isaac did lose his insurance, he reached his lifetime maximum at just over a year old, one month before the ACA was signed into law. In one year he used a lifetime ($2 million) in care. While he has access to Medicaid via a waiver, most of his care was and still is out of state – which is quite difficult to get covered by Medicaid. Affordable care has allowed him to access the best surgeons in the country. Without these surgeons he may not be alive today. His access to Medicaid allows him to have home health nursing, to monitor and care for him overnight so that I can work each day. This also allows him to access his education, as he has to have a nurse attend school with him. There are many prescriptions and services that insurance denies, some prescription can cost up to $3000 a refill. When these are denied by health insurance Medicaid picks up the cost."

Submitted by Isaac's mom, Kim