Rare In Common
Episode 14 — “Beautifully heartbreaking”: one mom’s rare and incredible journey
- Autor: Vários
- Narrador: Vários
- Editor: Podcast
- Duración: 0:27:02
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Sinopsis
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.