A fundraiser is set to take place next month for a Levittown, Pa. baby girl who captured the hearts of thousands nationwide and even inspired the proposal of a state law.
JoJo’s Ice Cream & Water Ice will host an event raising money for Hannah Ginion, a 1-year-old girl suffering from a rare genetic disorder known as Krabbe Disease.
The young girl, who was born on January 15, 2013, seemed healthy at first, according to her mother Vicki Pizzullo.
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"She was progressing like a normal baby," Pizzullo said. "She was perfectly healthy."
By the time Hannah turned 4-months however, the family noticed that something was wrong.
"It came on really slow," Pizzullo said. "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."
The family then took her to the Children's Hospital of Philadelphia where they learned the devastating news. On June 17, 2013, Hannah was diagnosed with Krabbe Disease, a rare degenerative disorder that affects the myelin sheath of the nervous system. Damage to the sheath slows down messages between the brain and the rest of the body, leading to problems with mental and physical development.
Krabbe Disease is so rare that it only affects 1 in 100,000 people, according to the U.S. National Library of Medicine.
Symptoms of the disease, including feeding difficulties, fever, vomiting, limb stiffness and seizures, normally begin to show when the child is between 3 to 6 months old. Infants who suffer from the disease generally have a life-expectancy of 2 years at the most. There is currently no cure.
After being told by doctors at CHOP that they weren't familiar enough with the disease to properly treat it, the family took Hannah to Dr. Maria Escolar, a specialist in the study of Neurodevelopment in rare disorders at the Children's Hospital of Pittsburgh. By then however, it was too late to get a transplant that could have alleviated some of the symptoms.
"Once symptoms start, it's too late to go back to a transplant," Pizzullo said. "That's why it's so important to have it when they're born."
According to the family, Hannah could have received more effective treatment if doctors knew she had the disease immediately after her birth, a message that they ultimately took to Pennsylvania lawmakers.
"We went to Harrisburg in October and went in front of the House and had a press conference," she said.
The press conference led to the introduction of a bill known as Hannah’s Law, which would add Krabbe disease and five other disorders to the list of conditions Pennsylvania hospitals must screen for newborns.
House Bill 1654, introduced by State Rep. Angel Cruz, passed the state house last January. Despite this, Pizzullo says the Senate still hasn't placed it on their agenda.
"We don't think they did it intentionally," she said. "We just don't know if they know the importance of it."
That's why Pizzullo says she and her followers have worked so hard to raise greater awareness.
"We're trying to get the word out there and let them know they need to get this on the agenda as soon as possible," Pizzullo said. "We're trying to get this law passed so that all babies born in Pennsylvania will be tested for this disease as part of their screening."
Pizzullo quit her job of 15 years to be with her daughter and dedicated her life to raising awareness for the disease. Along the way, the family gained support from the community and followers nationwide, after they created a website and Facebook page as well as a support page for the bill.
"We just love all of her followers," Pizzullo said. "They're just amazing. People are so supportive, especially our community."
As Pizzullo continues the fight to bring awareness, she's also dealing with her daughter's deteriorating health.
"She's tube fed and she's on oxygen 24/7," Pizzullo said. "She should be walking around right now and living her life. She can't because she was never tested at birth. The disease deteriorates her brain, that's why she doesn't smile or laugh. She hasn't laughed in five months."
Despite her situation, Pizzullo says she takes solace in the fact that her daughter has proven to be an inspiration and major factor in a movement that could ultimately save the lives of other children.
"If we could help other families and have her name be forever known, it would just be amazing," Pizzullo said.
A fundraiser for Hannah will take place at JoJo’s Ice Cream & Water Ice on 8801 New Falls Road, in Levittown, Pa. on April 15 from 6 p.m. to 9 p.m.
The event will include a raffle and music. You can also email the family at firstname.lastname@example.org for more information.