It’s a diagnosis that no parent ever wants to hear — your sweet, bouncy, fun-loving, child has a terminal illness and there’s no cure. But if you found out that you could have slowed the illness — maybe even kept it at bay — with a blood screen when your baby was born, your grief then might turn to anger and then to action.
Today we’re talking to a Mom taking action, about a scenario just like that. Sarah Penney McDonald’s son, Nash, had a seizure when he was 5, and shortly after that, doctors delivered a diagnosis of ALD – Adrenoleukodystrophy. A simple blood screen at birth would have prompted testing that might have slowed it down… and that’s what Sarah is trying to get for newborns in North Carolina.
Stay up to date on Nash: https://mailchi.mp/f25bcf92b119/nashs-ray-of-light
Run on Nash’s Team: runsignup.com/RaceGroups/109004/Groups/961500
Donate: www.gofundme.com/f/nashs-ray-of-light-ald
Podcast: Play in new window | Download (Duration: 17:27 — 12.0MB)