Rare In Common
Episode 14 — “Beautifully heartbreaking”: one mom’s rare and incredible journey
- Author: Vários
- Narrator: Vários
- Publisher: Podcast
- Duration: 0:27:02
- More information
Informações:
Synopsis
From navigating her son Case’s rare diagnosis with the help of her own mother (and a medical diagnosis television show) to being honored at a global summit meeting for patient advocates almost a decade later, Melissa Hogan’s story is raw and riveting. She describes the reality of her son living with mucopolysaccaridosis II, or Hunter syndrome, as “beautifully heartbreaking”— a sentiment that rings true for so many parents raising children with rare diseases.