When he was 3 years old, Stephen was diagnosed with isovaleric acidemia (IVA), a very rare genetic disease. Unfortunately, the late diagnosis left him in a coma and on life support. As a result, he suffered a traumatic brain injury resulting in severe intellectual and developmental disabilities and complex health issues.
“We were devastated with his diagnosis of a rare disease and the brain injury,” recalls Stephen’s mother, Jane. “How he was diagnosed was both traumatic and heartbreaking knowing that we lost a huge part of Stephen.”