Lola Long's Story

“Lola is a funny, outgoing, happy six-year-old.”

Lola Grayce Long was born June 4, 2012. Our largest baby of four children, she was a healthy happy baby!! At around six months she started to experience failure to thrive, constant thirst, and vomiting. By one year of age, her health was continuing to deteriorate and she was admitted to the hospital. After a month in the hospital, she was diagnosed with Nephropathic Cystinosis.

We spent the first year of diagnosis figuring out her medications, electrolyte balances, and nutrition. She was also enrolled in a study in Chicago to receive a drug that, at the time, was not yet on the market, but with support from foundations such as the Cystinosis Research Foundation, it has become a commercial drug for cystinosis.

During this time we found the Cystinosis Research Foundation and were amazed at the support for our family from this community! Cystinosis Research Foundation supports many research studies and clinical trials throughout the world. We feel blessed to support CRF and the groundbreaking research that they continue to develop and support for better treatments and ultimately a cure for this devastating disease!

Currently a first grader, Lola is a funny, outgoing, happy six-year- old. She is on a multitude of medications to continue to grow and to help stop the disease from further damaging her body. Some of these treatments are not great. We need to keep searching for better treatments and hopefully a cure for our daughter and other people living with this extremely rare disease. We are humbled by your continued support for the Cystinosis Research Foundation and our family!

Thank you! The Long Family!
Jim, Melissa, Ella, Ava, Jake, and Lola

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