Amy Storbeck

Amy has been sick since the day she was born and spent her first 3 months in the NICU.  She was born with two holes in her heart (ASD & VSD), 12 toes and 11 fingers, Hirschsprungs Disease, Urogenital Sinus and Vesicoureteric Reflux. After 14 years of testing, they finally found all her anomalies are linked to Bardet-Biedle Syndrome, a very "rare disease". Along with this syndrome is a deterioration of vision. Most people with this syndrome become blind. 

To this date, Amy has been thru 16 surgeries/procedures. Her last being a kidney transplant, September 17th, that she waited 5 1/2 years for. She was hospitalized for 3 weeks at Children's Hospital of Philly, with a number of complications but dealt with it all with a smile on her face. She takes 25 pills a day, a shot a week, goes to the bathroom every 2 hours, has to drink 6/7 bottles of water a day and travels back to Philly 2 times a week for clinic.  But for the first time in 5 1/2 years, she doesn't have any food restrictions and she is loving that. She truly is an inspiration as she takes everything that is thrown at her with that million dollar smile. 

Over the past month and a half Amy's family has incurred a lot of medical bills, in addition to the cost of gas back and forth to Philly, and so much more. Any donation that you can give, is so appreciated.