When our son was a little over a year old, he began dropping things and he still couldn’t talk. At first, doctors thought he had a cold. But we knew something was wrong. Eventually we learned that our baby boy wouldn’t survive his toddler years.” The couple were already expecting their second child when they received the diagnosis concerning their first: Niemann-Pick disease type A. No cure. No treatment.
Read the full article here. (Note: originally published in the journal “Ethics and Medics in May 2016)