Pars Fore Preston
Held Friday, May 19, 2017
The Pars Fore Preston Charity Golf Outing was started in 2017 and raised more than $11,000 on behalf of our grandson, Preston Luke.
Preston is three years old and was diagnosed with a rare disease called Cystinosis just before his second birthday. Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate inside the cells. As this Cystine builds up, crystalline structures develop within the cell. These structures eventually cause the cell to die. As more and more cells die, organs begin to fail. All organs and systems are affected by Cystinosis however, the disease seems to target the kidneys, eyes, muscles, and bones. Not too long ago, a child diagnosed with Cystinosis was destined for Kidney failure and transplant surgery before age 10, and a life expectancy of less than 2 decades. Recent advances in medications and treatments have extended the expected lifespan, and there is more hope on the horizon. Researchers have isolated the Gene that causes Cystinosis, and are working with the FDA on specific treatments that could indeed lead to a cure. There is still much work to be done.
Like most young children who are sick, Preston has accepted his life as normal. He is a happy little boy with a tremendous love for life. His daily routine includes dozens of medications and supplements. His regular visits to the doctors, hospitals, and labs are just a part of his life. Th e only life he knows. He is able (and loves) to eat, but still takes numerous supplements through his gastric tube. Every dollar raised by this event goes directly to the Cystinosis Research Foundation to help fund research into medications to improve the quality of life, and to continue the march toward a cure.
Thank you for your participation and your generous support of Pars for Preston, with your help we raised mover $11,000 for cystinosis research. You have provided HOPE to Preston and the cystinosis community that better treatments and a cure are on the horizon!