Family, videography key to teen battling rare disease
Author: Michael DiVittorio for Trib Total Media
Published On: 01/28/2018
Alex Leisenring dreamed of a white Christmas and not a hospital visit.
Those are his words, the ones that label the Gateway High School senior's video log made on Christmas Day from his bed at Children's Hospital of Pittsburgh of UMPC. Only one of his dreams came true last year.
“Yep ... it's a white Christmas. First one since 2010,” he says on the recording as the camera takes a panoramic view of the city. “Pretty amazing view you get from the ninth floor.”
The 18-year-old talks with an upbeat spirit that belies the fact he suffers from a genetic disorder called neurofibromatosis type 1 that has riddled his body with tumors — including a malignant cancer found a few months ago along his sciatic nerve in his pelvis.
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