‘Hannah’s Law’ Signed by Gov. Corbett

The piece of legislation known as “Hannah’s Law” was signed by Gov. Tom Corbett in Harrisburg on Wednesday.

“Hannah’s Law” expands prenatal screenings for Krabbe disease, as well as other degenerative diseases. Lawmakers hope early detection will improve care for kids diagnosed with certain rare disorders.

The law came to be after Hannah Ginion’s family raised awareness of the issue. Baby Hannah, who lives with her parents in Bristol Township, suffers from Krabbe disease. The disease is a a degenerative condition for which there is no cure. According to Mayoclinic.org, Krabbe disease affects about one in 100,000 people in the United States and gives them a few months to a few years to live.

“It is an honor to sign this bill, which will help to improve and hopefully save the lives of some of Pennsylvania’s most vulnerable population – our children,” Corbett said.

According to state officials:

Currently, Pennsylvania’s birthing facilities test for 6 mandated conditions and 23 follow-up conditions – everything from cystic fibrosis to congenital heart disease.

The new law will require physicians, hospitals and other institutions to add certain lysosomal storage disorders to the list of diseases for which newborn children are screened. Health care providers will now be required to test children for Globoid cell leukodystrophy (Krabbe disease), Fabry, Pompe, Niemann-Pick, Gaucher and Hurler Snydrome.

“Hannah will be a hero,” Hannah’s mother, Vicki Pizullo, recently told LevittowNow.com. “It’s an amazing feeling because Hannah will always be a hero; her name will never be forgotten.”

At an event to celebrate the signing of the law, Physician General Dr. Carrie DeLone read a statement from Pro Football Hall of Fame Member and former Buffalo Bills quarterback Jim Kelly, who now advocates for increased newborn screening. Kelly’s young son Hunter died of complications from infantile Krabbe disease.

“When my son Hunter was diagnosed with Krabbe Leukodystrophy in 1997, there was no hope for treatment to stop this devastating and fatal disease. Thankfully, because of children like Hannah and Hunter, this will no longer be the case for children born in Pennsylvania. Through Hannah’s Law all babies will be screened for Krabbe Disease at birth, giving them the opportunity for life-saving treatment,” Kelly said. “I’m proud of Governor Corbett and my home state for understanding the importance of early detection through Krabbe newborn screening. Because of Hannah’s Law, future babies born in Pennsylvania will have the chance at the healthy life they deserve,” he wrote in a statement.

The state currently requires birthing facilities to test for 6 mandated conditions and 23 follow-up conditions – everything from cystic fibrosis to congenital heart disease.

“The new law will require physicians, hospitals and other institutions to add certain lysosomal storage disorders to the list of diseases for which newborn children are screened. Health care providers will now be required to test children for Globoid cell leukodystrophy (Krabbe disease), Fabry, Pompe, Niemann-Pick, Gaucher and Hurler Snydrome,” according to a press release.

The new law takes effect in 60 days.

“This bill gives other families like them a reason to hope and a chance for their childrens’ futures,” Corbett said.