Bucks County Baby Who Inspired Infant Screening Law Dies

Hannah Rose Ginion, a Levittown one-year-old who inspired an infant screening law and helped raise awareness for Krabbe disease, has passed away.

Hannah, whose parents started the Hope for Hannah organization to raise awareness for the rare genetic disease, passed away Sunday.

“Hannah was called home to be with the Angels this morning. She went peacefully. Please keep us all in your prayers during this difficult time,” her family wrote on the Hope for Hannah Facebook page. The page had been a platform for updates on the child’s condition.

Hannah would have turned two in January.

Hannah suffered from a rare and fatal strain of leukodystrophy called Krabbe (pronounced krabb-a) Disease. Also known as Globoid Cell Leukodystrophy, Krabbe is an inherited genetic disorder that affects the central and peripheral nervous systems.

Those diagnosed with the disease lack an enzyme needed for the production of myelin, which is white matter that surrounds and insulates nerve cells and helps transmit electrical messages to the brain. The disorder affects vision, speech, movement and physical and mental development.

Hannah’s parents, Vicki Pizzullo and Justin Ginion, said they noticed that Hannah was not developing properly soon after she was born in January 2013. She also had trouble eating. After running blood tests, doctors determined she had the rare form of leukodystrophy.

Hannah’s condition could have been cured if doctors knew about it immediately after her birth, her mother has said. Because of that, Pizzullo made it her mission to increase awareness of the disease, eventually prompting Pennsylvania lawmakers to pass Hannah’s Law, which requires infants to be screened for the disease.

“There’s no cure for Krabbe,” Pizzullo told Patch in 2013. “It’s so important to get the word out and have newborns screened right away. This whole outcome could have been different.”