On June 4th, 2012, I was born a healthy, happy baby, but I started to experience failure to thrive, constant thirst, and vomiting. My health was continuing to deteriorate, and I was later admitted to the hospital. After a month in the hospital, I was diagnosed with nephropathic cystinosis. My parents spent most of the early months of my diagnosis trying to figure out my medication, nutrients, and water intake.

When I was diagnosed, I was enrolled in a study for a drug that was not on the market. During this time, we found the Cystinosis Research Foundation, and we were so grateful for the support from this community.

I am currently an eighth grader, still my happy, outgoing self. I have made lots of new friends and love doing swimming as a sport. Living with this rare disease has not been easy. I’m having more surgeries, like guided growth plates, and I am still on lots of different medications. While I am thankful for these treatments, they come with a lot of different side effects that make me feel nauseous and often give off a bad Odor.

A couple of summers ago, I started growth hormone injections, and I have been working very hard to thrive and achieve my goal to stay healthy. The Cystinosis Research Foundation continues to fund research for better medications and treatments without all the side effects. As well as the stem cell transplant that is currently in trial and will hopefully soon be available for everyone with my disease. 

I’m so grateful for the Cystinosis Research Foundation and the help they give me and all the families in this community. I’m so thankful for my family and friends who continue to donate and support me in this journey to live my healthiest and happiest life!

Sincerely, 

Lola Long