Sometimes, the biggest battles are quietly fought at home. Every day in my house, we’re fighting to keep my daughter alive and thriving. My daughter, and our family, is fighting a disease so rare that its classified as an ‘orphan’ disease and most doctors have never heard of it before. My 9-year old daughter Morgan has Cystinosis – a rare genetic metabolic disease that affects less than 500 people in the United States and less than 2,000 people worldwide.
Patients with Cystinosis have a genetic defect within the lysosomes of all of the cells in their bodies, which allows the amino acid cystine into the cells, but they have no transporter out. Because of this defect in transportation, the cell crystallizes and causes early cell death. Cystinosis slowly destroys the organs in the body including the kidneys, liver, eyes, muscles and brain. Various medications are required to be administered every six hours to slow progression of the disease.
With such a rare disease affecting such a small population, research money is scarce to non-existent. The majority of money raised for Cystinosis research comes directly from family and friends close to those dealing with the disease. Through our family’s fundraising efforts last year, we raised over $13,000 and Morgan presented a check to the Cystinosis Research Foundation in April during their annual Day of Hope Conference.
On Sunday, September 18th in Avon, OH, we’re holding the 2nd annual Mulligans Fore Morgan golf outing benefitting the Cystinosis Research Foundation. Registration is open until September 1st. 100% of donations made to the Cystinosis Research Foundation – every single dollar, every single penny – goes directly towards research to help find a cure. I can't think of another non-profit organization that can make a similar claim!
I have HOPE for a CURE, as every day holds the possibility of a miracle for Morgan. If you’re interested in supporting Mulligans Fore Morgan, please contact Jen Peachman at (440) 342-7817.
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