LOUISVILLE, Ky. (InvestigateTV) — An estimated 30 million Americans are grappling with a disease considered to be rare.
A rare disease is categorized as fewer than 200,000 people in the U.S. have been diagnosed. About half of those are children, some of whom will not live to see their fifth birthday.
Medical challenges and complications
Carter Twigg held her son Owen for the last time on Sept. 29, 2023, after he went to sleep and didn’t wake up.
Owen Twigg was born with a cleft lip and palate and complex respiratory conditions. By age one, he had spent 278 days in hospitals across three states and undergone multiple surgeries to help him eat and breathe…