Lola was diagnosed with cystinosis in June 2013. Cystinosis is a devastating ultra-rare disease with only 2000 cases diagnosed worldwide. By most outward appearances Lola and other children with her disease appear somewhat normal, however internally every cell within their bodies is being ravaged by the disease – even with medications over time cystinosis will destroy organs and core functions within their bodies. Currently, there is no cure and cystinosis is considered a terminal disease. We are grateful for your support and joining our quest for the cure to help Lola and all the other children with cystinosis thank you!
Melissa and Jim Long
