Flights Are “True Blessing” for Boy with Rare Disease

by Marie Vesley, AFMA Volunteer Writer [Photo depicts Angel Flight pilot Charlie Poll and his little buddy, Josh] Joshua, 10, is an active and happy fifth-grader who does well in school and loves playing golf. In his short life Joshua and his family have faced a great many challenges and have been regular users of Angel Flight services. As a result of rare congenital medical conditions known as Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis, Josh’s kidneys and liver have never worked properly.  He has cysts on his kidneys which result in impaired kidney function and hypertension controlled by medication. Josh’s liver is affected by fiber-like connective tissue which also causes bleeding in his esophagus. At some point, he will be a candidate for a transplant. With all this going on, Josh must be seen frequently for specialized medical care in cities far from his Evansville, Indiana home. Approximately every four months he and his mom, Kim, make the trip to see liver and transplant specialists at Children’s Hospital of Pittsburgh. They are usually there for several days of tests and procedures. In addition to these trips, Joshua and his mother make quarterly trips to Birmingham, Alabama to see kidney specialists. Kim learned about Angel Flight while sitting at a local softball game about two years ago. Since then Angel Flight has been helping Josh and Kim make their flights to Pittsburgh. Calling it a “true blessing,” Kim credits this assistance with cutting down substantially on their travel time and on the wear and tear on their family. The pilots– Charlie, Tony, David and Vince— have been wonderful. “They are fabulous, and I love all of them,” Kim enthused in a phone interview. Kim reported is a full-time mom who substitute teaches when her son’s medical appointment schedule allows. Her husband, Tom, works in the golfing business in Santa Claus, Indiana – yes, there really is such a town! Joshua’s sister Victoria is 11 and also a golfer. Kim reports that managing Joshua’s medical issues is especially hard on Victoria. Earlier this year the whole family got to go on a golf vacation to Pebble Beach, California through Make a Wish Foundation. A dream fulfilled for a family of avid golfers! Angel Flight stands ready to assist Josh and his family with future flights when needed, providing “the shortest distance between home and hope.”

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