| Subject: Bailey Believes: Ride for a Cure Event |
Author:
Bruce W.
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Date Posted: 14:58:47 10/02/12 Tue
About Bailey DeDio
Bailey was diagnosed with Cystinosis Disease on Friday August 13th 1999; 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 14 years old and from the outside no-one would know he is suffering from a life threatening disease called Cystinosis. Bailey takes 75 pills per day to keep him alive, eye drops every hour and Growth Hormone shot every night. We fly to Stanford, CA to get his RP-103 medication which helps rids his body of 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, like high blood pressure, high triglycerides, high cholesterol, his pancreas doesn't work properly and his kidney function is less than 40%, according to his nephrologist Bailey is going to need a transplant sometime in 2013.Bailey loves to ride dirt bikes, bikes, to eat steak and be with his friends. 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,
Jessica, Jay, Bailey, Ryder and Chris
Link https://cystin.sslcert14.com/donate-4-bailey
Directions to Barstow/ Stoddard Valley OHV Area:
Take I-15 North towards Victorville/ Barstow to Outlet Center Drive Exit, (Signs for Barstow/ Stoddard Valley OHV Area
are shown on interstate). Take Outlet Center Drive Exit and turn right off exit. Entrance to OHV Area is on right.
Turn right into OHV Park (Enter onto dirt road) and turn left at the information shed. Take road to second restroom area.
Camp site will be on your left. Look for "Bailey" signs upon entering park that will also lead you to our camp site.
Thank You Tim Boucher (714)642-0245 (This is my Dad's cell in case you have questions, also)
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