Author:
Tanya Chilcott
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Date Posted: 16:27:43 09/13/13 Fri
All welcome to our Ride For A Cure! For info, to register, or to donate go to www.cystinosisresearch.org/donate-for-bailey. We are expecting a huge turnout this year!
About Bailey DeDio
Bailey was diagnosed with a rare disease called Cystinosis on Friday August 13th 1999 at 18 months of age. The doctors told me that Bailey would not live until 10 years old. I will never forget that day for the rest of my life. Bailey is 15 years old now and from the outside no one knows he is suffering from a life threatening disease. Bailey takes 75 pills per day to keep him alive, eye drops every hour to keep him from going blind and 2 shots per night. We fly to Stanford, CA to get his RP-103 medication which helps rid his body of the Cystine crystals that will eventually shut down all his vital organs. We fly to Bethesda, MD for doctors’ visits and to get his eye drops which help rid his eyes of the painful Cystine crystals, which if left untreated will cause blindness. Bailey has a lot of other health issues caused by Cystinosis, like high blood pressure, high triglycerides, high cholesterol, his pancreas doesn't work properly and now he is in stage four kidney failure and is in critical need of a kidney transplant.
I had always planned on donating my kidney to my son. Earlier this summer, I was told I could not give my kidney to Bailey because my anatomy did not line up properly and the surgery would be too risky for Bailey. Because my husband has a history of kidney stones, he cannot be a donor either. Bailey’s kidneys are now only functioning at 15% and we are in desperate need to find a donor otherwise he will have to live on a dialysis machine. Right now because of his health, Bailey spends half of his day sleeping and is now on home school studies.
Bailey loves to ride dirt bikes, work on bikes, and loves just about anything with a motor on it. He loves collecting junk, having yard sales and making his own money. At 15 years old, he bought his first car with his own money. He is bright, very witty and funny. Bailey is truly a miracle and I am truly honored to be his mother.
With your support and donations you are helping make Bailey's and other children with Cystinosis dream for a cure come true. Words cannot explain how THANKFUL we are for your LOVE and GENEROSITY.
Here's to a cure, health, love and happiness,
Love Always, always believe
Jessica, Jay, Bailey, Ryder and Chris
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God is NOT dead!
Just a shout out of THANKS So Cal National race PITS
02/10/2013 Four Aces Spangler
