Billy will turn 14 in January, 2015...He has Duchenne Muscular Dystrophy, the most lethal childhood genetic disease and most severe form of Muscular Dystrophy; it is 100% fatal with life expectancy in the 20's. Billy is considered mid-life right now.
Billy is one of 12 boys in the United States in a ground breaking clinical trial receiving the intravenous drug Eteplirsen from Sarepta Therapeutics. He is currently in his 4th year of the trial.
His medical care consists of weekly visits to the hospital for intravenous infusions; he has had 4 surgeries, numerous ekg's and echocardiograms, blood draws, physical therapy, muscle strength testing, MRI's, scans, and other procedures.
While he knows that he is one of the lucky ones receiving this ground breaking and life changing treatment, the disease itself has been an intrusion and has robbed him of a "normal" childhood.
He is truly enduring and living an adult experience instead of savoring his youth.
Billy worries about not being able to take care of himself when he is older and he does not want to worry or burden his mom or dad. A 12 yr. old boy should not be worrying about such things.
As Billy proclaimed in a 2012 Pittsburgh television interview, "all I want to do is walk, to walk for all my life".
This page has been created to help eliminate Billy's worries & to fund Billy's medical needs and current and future medical expenses and equipment that he may need and not covered by medical coverage. At this time, I am striving to keep him in his current home and only neighborhood that he has ever known......this will offer him stability while he endures a lifetime of treatment for his rare disease. Our current home will need modifications for Billy's ease and comfort & this fund will help with these needed changes. This is Billy's big wish, please help grant this wish to keep him in his current home & neighborhood.
For those of you that know Billy or have gotten to know him through the many pictures, videos, & media posted, he truly is a joy to be with. He would want all of you to know that he is indeed, "funny and lively".