Cause: Cystinosis

When I was 16-months-old, on the cusp of toddler-hood, doctors told my mother and father that I would not live to see my 10th birthday. I was diagnosed with cystinosis, a condition so incredibly rare, that the majority of doctors have never ever heard of it, let alone have any …

When I was 22 months old, my parents were in the middle of a fight to find out what was wrong with their daughter. My mom (my fight-like-a-girl role model!) visited doctor after doctor and endured multiple misdiagnosis’ before finally hearing the word “cystinosis”. When she and my dad looked …