A Pennsylvania baby girl, who inspired a new Pennsylvania screening law, died on Sunday. She was less than one month shy of 2-years-old.
Baby Hannah Ginion suffered from Krabbe disease, an inherited condition that destroys nerve cells. She was diagnosed with the disease at 5-months-old, but it was already too late in her life to undergo a cord blood transplant that could have stopped or slowed the progression of the disease in her infant body, reported Philly.
Hannah's parents, Vicki Pizzullo and Justin Ginion, first began to pick up on the symptoms of the disease when their daughter was just 4-months old.
"It came on really slow," Pizzullo said to NBC Philadelphia. "She started crying all the time. She hated eating out of a bottle, she was choking and she was losing her swallowing ability. She would suck on a bottle and she would start choking. When we went to go feed her again, she was scared to eat."
Hannah's rare condition inspired a state law that requires hospitals to add six lysosomal-storage disorders to the list of conditions for which they screen newborns - Globoid cell leukodystrophy (Krabbe disease), Fabry, Pompe, Niemann-Pick, Gaucher, and Hurler syndrome.
Krabbe disease only affects 1 in 100,000 people, according to the U.S. National Library of Medicine.
Gov. Tom Corbett signed the law - called "Hannah's Law - in October and it went into effect last month. The law was first proposed by Hannah's parents, reported Philly.
"Hannah's impact will be felt in immeasurable ways," Corbett said in a statement. "Hannah will be remembered for giving other families a reason to hope and a chance for their children's futures."
