Raising a Child With a Rare Disease

https://ourgrandfatherstory.com/video/raising-a-child-with-a-rare-disease/

Today is Leap Day, and also #RareDiseaseDay 🌟

For 3-year-old Christopher who was born with a rare genetic condition (bile acid synthesis disorder), he probably won’t remember much of what it’s been like growing up.

But it hasn’t been an easy nor forgettable journey for his family. This is Geoffrey and Amelia’s letter to their special boy: You are not alone, so be brave and have courage.