In Harrisburg, A Push To Screen Newborns For Rare Neurodisease
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By Tony Romeo
HARRISBURG, Pa. (CBS) — NFL Hall of Fame quarterback Jim Kelly paid a visit to Pennsylvania’s capitol today to push for legislation that would require screening of newborns for a rare but debilitating brain disorder.
Krabbe Disease, which robs its victims of motor skills, is not curable, but advocates say early detection and treatment is critical for newborn babies.
Vicki Pizzullo (second from left in photo, wiping her eyes) travelled from Bucks County to tell of the challenges faced by her infant daughter: “Hanna will never walk, crawl, talk, smile, laugh, or play — ever.”
Former Buffalo Bills quarterback Jim Kelly (at lectern in photo) is the founder of Hunter’s Hope, named for his infant son who also suffered from the disorder and died at age eight.
Kelly says he’s had several surgeries and a cancer diagnosis in the last two years. “But I’ll tell you what, I am not stopping. The good lord knows that I’m on a mission. I’m on a mission to make sure that all these families don’t have to go through what my soon went through.”
Legislation is pending in the Pennsylvania House that would add Krabbe (pronounced crab-BAY) and a number of other diseases to the list of those for which newborns must be screened.