In two months, newborn babies in Pennsylvania must be screened for several more metabolic disorders in the hopes of treating developmental diseases before they become too severe.
Vicki Pizzullo of Bucks County tearfully thanked lawmakers and the governor for approving Hannah’s Law, named after her 21-month-old daughter, diagnosed too late with a disease known as Krabbe leukodystrophy. It will become one of six disorders added to the state’s mandatory testing list for newborns.
“The disease isn’t so rare,” Pizzullo said, flanked by supporters of the bill and her family, and across the room from a blown-up photo of her daughter wearing sunglasses, lying on the grass. “If we can save babies through a screening, I think that would be just absolutely amazing.”
The screening will come too late for Hannah.
“Hannah will never walk, crawl, talk, or smile or laugh or play, ever,” Pizzullo said. “Her sight is gone. She has apnea spells which make her turn blue. She has to be suctioned through the day because she doesn’t swallow.”
Hannah has suffered two cardiac arrests in the past year, Pizullo said. She and her husband have signed a do-not-resuscitate order in case of another.
Legislative analyses say the state will pay for all additional screenings, estimated to cost up to $720,000 a year.
Gov. Tom Corbett signed the bill into law Wednesday, thanking Pizzullo for her advocacy.
I really wish we weren’t meeting,” Corbett said. “I really wish that your daughter would be like every other little girl that would not be suffering from this disease.”