By Stephanie Stahl
PHILADELPHIA (CBS) — Pennsylvania lawmakers are expected to vote soon on a bill called Hannah’s Law, named after a little girl in Bucks County.
3 On Your Side Health Reporter Stephanie Stahl has more on how it could change a routine test.
Hannah Ginion is almost two-years-old. She’s an adored baby who can’t move, eat or communicate.
“She just lays there and sleeps,” said Vicki Pizzullo, Hannah’s mother.
It had been so different when she was born, big and healthy.
But when Hannah was about four-months-old, she became extremely irritable and had trouble swallowing. She was diagnosed with Krabbe disease. It’s a very rare, degenerative disorder that’s deadly.
“Horrible. It’s sad. Wasn’t supposed to be like this. I should be chasing her around,” said Vicki.
She says if Krabbe had been included in the newborn heel prick screening test, that all babies get, things could have been different for Hannah. While not a cure, experimental stem cell transplants can sometimes ease the symptoms if detected before they start.
“Hannah’s life couldn’t be saved, but we could save other lives from this,” said Vicki.
Pennsylvania House Bill 1654, known as Hannah’s law, would mandate that screening for Krabbe is included in the newborn check. It’s already the law in a few other states, including New Jersey and New York, where Hall of Fame quarterback Jim Kelly pushed for the legislation after his son Hunter died from Krabbe at eight-years-old.
“Its’ a very difficult situation,” said Dr. Paige Kaplan, Director of Metabolic Medicine at The Children’s Hospital of Philadelphia.
She says there are pros and cons to including Krabbe in the newborn screening. She says letting parents, like Hannah’s, know what’s coming can be helpful, but a positive test doesn’t mean the baby will get sick, so there could be unnecessary anxiety and there would be additional costs.
“It is an extremely rare disease, and we don’t yet have good treatment for it,” said Dr. Kaplan.
“You would want to try anything to save your baby’s life,” said Vicki.
She says at least the screening would provide a little ray of hope, hope for Hannah and others born with the devastating illness.
“She doesn’t deserve this. She wasn’t given a fair chance. No other family should go through that,” said Vicki.
Eyewitness News checked with Governor Corbett’s office. We’re told he supports Hannah’s Law and is likely to sign it, if it’s passed by the Senate.
Krabbe Disease Information- http://ghr.nlm.nih.gov/condition/krabbe-disease
Hunter’s Hope Foundation- http://www.huntershope.org/site/PageServer
Hope For Hannah- https://www.facebook.com/hopeforhannahbear