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About Mary Head
After months of health deterioration, Mary was diagnosed with Cystinosis at 9 months of age. Mary is now 7 years old, and sustains her weight with a blended diet through her G-tube. Her health is monitored carefully by her doctors and she has regular appointments and lab draws to make sure she continues to thrive. Mary is a trooper, enduring a full daily schedule of vitamins, medications and nutrition supplements through her G-tube, in addition to her hourly cysteamine eye drops. Despite this challenging schedule, Mary remains happy, funny and full of love. She loves her family, church, her friends, anything “Frozen” and her new baby sister! Mary looks like any other 7 year old but we know the horrible effects cystinosis is causing on the inside of her body. The shadow of the disease is always present. Our family lives day to day, knowing that Mary’s health is fragile.
We thank everyone who is supporting the Cystinosis Research Foundation and the quest for a cure in order to help Mary and all the children and young adults with cystinosis.