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Parents, lawmakers push for newborn testing bill - abc27 WHTM

Parents, lawmakers push for newborn testing bill

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HARRISBURG, Pa. (WHTM) -

Nine-month-old Hannah Ginion is a beautiful baby, but she's not like most children her age: She has a life-threatening disease.

"She was diagnosed at five months with Krabbe, a rare genetics disorder which gives you a live expectancy of 13 months to 2 years," explains her mother, Vicki Pizzullo. "Hannah will never walk, crawl, talk, smile, laugh or play."

Lawmakers introduced legislation that would require hospitals to test newborns for Krabbe disease along with five other disorders.

NFL Hall of Famer Jim Kelly had a son who was diagnosed with Krabbe disease. "There's not a day that goes by that I don't think about him," Kelly says, "but I try not to stay focused on what could have been, because if I do, that it will only tear me apart."

His son lived with the disorder for eight years. Now Kelly is pushing lawmakers to pass this bill. "I'm on a mission to make sure all these families don't have to go through what my son went through."

Rebecca Bourassa shares a similar story. Her first son lived to be nine months old before he passed away. When Bourassa found out she was pregnant with her second son, Joshua, she was tested for the same disease. It came back positive.

When Joshua was born, he was immediately treated with a cord blood transplant. Now he's nine.

"I thank God that he was able to have a transplant because without a transplant he wouldn't be here today," Bourassa said.

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