Donate For Bailey
About Bailey DeDio
Bailey was diagnosed with a rare disease called cystinosis on Friday, August 13, 1999 at 18 months of age. The doctors told me that Bailey would not live to be 10 years-old. I will never forget that day for the rest of my life. Bailey is 16 years old now and from the outside no one knows he is suffering from a life threatening disease. Bailey’s life revolves around a clock/timer to remind him of his disease and daily medications. He takes 85 pills per day to keep him alive; eye drops every hour to keep him from going blind and constant blood draws and doctors’ appointments.
Last year Bailey’s kidneys failed and he had to begin life-saving dialysis. Bailey was so weak and tired he spent 20 hours a day or more in bed and we did PD dialysis manually four times per day. On January 14, 2014 Bailey received the most beautiful gift ever, a kidney – “The Gift of Life”- from a family friend/Angel/HERO, whose son also has cystinosis her name is Mary Jordan. Since Mary’s beautiful gift I have seen my son do things I have only dreamed about. Three months post-transplant Bailey walked a 5K in honor of his donor Mary for the Donate Life Walk. That day was beautiful it brought tears of thankfulness, love and joy to my eyes. I thank GOD every day for my miracle, Bailey!
Bailey has so many things he wants to accomplish in his life, getting his driver’s license, learning to work on engines; he loves dirt bikes, motorized bicycles and anything with a motor, even the lawn mower (lol). He loves collecting junk, having garage 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. Bailey often worries about his future and will say mom, I don’t think I can move out when I am 18 years old, I reply, that’s fine and he his response, who will pay for my medicine. One of Bailey’s 85 pills daily pills costs 55,000.00 per month. Bailey requires lots of medical doctors; we drive to UCLA once a week to see his transplant team, he also sees a nephrologist, cardiologist, orthopedic and an endocrinologist. Bailey suffers from high blood pressure, high triglycerides, high cholesterol, and his pancreas doesn’t work properly and the latest report from UCLA revealed his liver function is high; all of this caused by cystinosis. I hate Cystinosis!
I am so proud of Bailey for not giving up and fighting this fight called cystinosis, day in and day out. We are desperately seeking a cure for our sweet Bailey and his friends who suffer from cystinosis before it is too late. As the Cystine accumulates in the cells it damages all organs including the kidneys, brain, liver, thyroid gland and eyes. Because the disease affects such a small population, research money is almost non-existent. When you donate to Bailey Believes and the Cystinosis Research Foundation, 100% of all donations go directly to find better treatments and our wish and dream of a cure and a life free from cystinosis.
Love Always, Always BELIEVE,
Jessica (Bailey’s mom), Jay (Bailey’s dad), Ryder (Bailey’s brother) DeDio