Josie's Birthday Letter

Dear Friends and Family,

super hero

Josie has developed an interest in super heroes over the past couple of years. Her favorite is Black Widow and while Black Widow doesn’t really have any special powers, she works really hard to be successful. In honor of our very own superhero we are asking friends and family to consider making a donation to the Cystinosis Research Network (CRN) in honor of Josie’s 10th birthday.

Josie was diagnosed with Cystinosis and the accompanying Fanconi Syndrome, rickets and Failure to Thrive at 14 months of age. Cystinosis is an extremely rare genetic metabolic disease affecting between 400-500 children in the United States and about 2,000 in the world. Cystinosis blocks an amino acid called cystine, from passing through the cells of her body, thus accumulating and forming crystals. This disease has the potential to impact all of the organ systems in the body leading to kidney failure, muscle wasting, diabetes, blindness, pulmonary deficiency, hypothyroidism, and neurological damage. Her bones, kidneys and corneas have already been affected.

She takes medicines around the clock to fight this disease. 32 capsules, four tablets and 56 mL of liquid medications are part of her daily routine. She has not slept through the night since she was diagnosed nearly nine years ago. The medicines taste awful and smell just as bad. The medicines are hard on her stomach, so vomiting is normal in our house-hold. Eye drops are administered every waking hour, which is near impossible to be in compliance with. Dehydration is always a worry, when it is especially hot. None of this will change for Josie until a cure is found or improvements are made to existing treatments.


Despite these challenges, Josie is thriving at home, school and in life due to the great medical care and amazing support within the Cystinosis community. She faces every new challenge in life with determination. Josie swims and has a great love for basketball. Her quick-wit and huge heart are developing her into a very strong, confident young lady.

We wish you could see what a difference CRN and the Cystinosis community have meant in our lives. Josie is bursting with anticipation for each CRN Family Conference where she connects with children who deal with the same challenges she faces. At the last conference she confided in me “This is the only place where I feel like someone else is just like me!”

Please consider supporting the efforts of CRN by making a tax deductible contribution in honor of Josie Sexstone. Make sure to note it is in honor of Josie Sexstone. CRN is dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about Cystinosis. Thank you for being part of Josie’s Journey.

With love and gratitude, Jenni and Jim Sexstone

As a 501(c)3 non-profit, advocacy group, your donation made payable to the Cystinosis Research Network is fully tax deductible. To be part of Josie’s tenth Birthday Celebration, please send your check to:

Cystinosis Research Network
302 Whytegate Court
Lake Forest, IL 60045

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Josie's Birthday Letter

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