CRF Stories | Hadley

Our Journey with Hadley

Hadley was diagnosed with cystinosis on April 4th, 2012 at 18 months old. She had lost significant weight, stopped growing and was behind in her gross motor skills. Upon diagnosis, she started an around the clock regimen of time-sensitive vitamins and medications which are administered through a g-tube in her stomach every six hours.

Hadley is now a thriving little girl with a passion for life. Her legs, once weakened by rickets, are now strong! She continues to grow and develop thanks to excellent treatment and a new love for food. Hadley enjoys playing with animals, dancing, dressing up and playing dolls with her big sister, Stella. Despite regular blood draws and regularly getting sick from her medication, Hadley is a happy and precocious child with an incredible sense of humor. She steals the hearts of everyone she meets!

Hadley is a fighter and doesn’t let cystinosis slow her down. With your support and donation to the Cystinosis Research Foundation, we are one step closer to realizing our dream of a cure!

Thank you for helping Hadley and the Cystinosis Research Foundation achieve its primary goal of finding better treatments and a cure for cystinosis.

Marcu, Ben, Hadley and Stella