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 experience treating anyone with it. There are less than 10 people in my home state of Utah who are living with it. Cystinosis causes cystine crystals to build up in every single cell and organ of the body. It causes kidney failure, diabetes, muscle wasting, blindness, voice problems, swallowing issues, and many other complications. There is no cure and the only treatment to slow down the progression is a drug called Cystagon. It is a sulfur-based medication that causes intense GI problems, extreme fatigue, and headaches. Treatment hasn’t changed in over 30 years and I fight every day to make a difference in that through fundraising and awareness. Because the disease is so rare, there are very little funds … [Read more...]