State Rep. Tina Davis, D-Bucks, won unanimous House support for her resolution increasing awareness of an incurable but preventable disorder that a 1-year-old Levittown girl is battling.
“House Resolution 484 names January 15th as Krabbe Disease Awareness Day in Pennsylvania, which is the first birthday of Hannah Pizzullo of Levittown,” Davis said. “Her parents -- Vicki and Justin -- wanted to be in Harrisburg today to help spread the word about the disease, but Hannah suffered a setback over the holidays and they couldn’t be here.”
Krabbe disease is one of six genetic storage disorders affecting the central nervous system. However, it’s one of the rarest and most deadly strains, affecting about one in every 100,000 people in the United States, and mostly infants younger than 6 months.
“It seems so cruel that the younger the age that Krabbe disease occurs, the faster it progresses,” Davis said. “You don’t have to know Hannah or her parents to be moved by the sadness of it all.”
Davis said the most heartbreaking aspect of the disease is that it is preventable if caught early with simple screening at birth, using the same heel prick that an infant already receives.
“Hannah’s condition has inspired many across Pennsylvania, and today the House gave final passage to House Bill 1654, which adds Krabbe disease to the list of disorders screened at birth,” Davis said. “Hannah’s struggles are making for brighter futures, and I was eager to vote again for Representative Angel Cruz’s legislation, which now heads to the state Senate.”
Davis said solace is hard to come by when considering Hannah’s prospects of seeing a second birthday.
“I encourage everyone to learn more about Hannah Pizzullo, Krabbe disease and how screenings at birth can prevent future misfortunes,” Davis said. “It’s important that we all play a role to see that Krabbe disease afflicts no more of our babies.”
The bill will now have to make its way through the state senate before it can be placed on Governor Tom Corbett's desk.