Hannah Ginion's family is urging the Pennsylvania state senate to support her bill so other newborns can be saved.
Hannah Ginion came into the world a health happy baby, but at 4-months-old she stopped eating.
"The next day they gave her an MRI, and a 5:00 that night they said they believed she had Krabbe and she had 13 months to two years to live," said Vicky Pizzullo.
Now at nearly 13 months, she is blind, has limited movement, she needs a feeding tube and doesn't have the ability to swallow. She needs 24-hour care.
Krabbe is a rare, inherited disease that affects cells in the brain, eventually slowing or blocking messages between the brain and the rest of the body.
Infantile Krabbe is generally fatal before age two. There is no cure for the disease, but children who received treatment using umbilical cord blood stem cells have seen progress.
Hannah's Facebook page has caught the eye of people across the world and state lawmakers who crafted a bill in her honor.
The bill passed the Pennsylvania House but still needs support in the state senate.
If Hannah's bill is passed Krabbe disease would join the list of diseases that newborns would have to be tested for in Pennsylvania.
"When we found out that there was a test that could be done, we realized that we don't want another family to go through this," said Vicky.
Throughout Hannah's journey the community has shown tremendous support to mom Vicky, dad Justin and Hannah's older sisters.
On April 15th, Jo Jo's ice cream in Levittown will hold a fundraiser to help with the cost of Hannah's care.
In the meantime, her family wants to see Hannah's bill become law so that other children with her prognosis can have a chance.
"It's not a cure. It's a treatment, but she would probably would not be how she is today. She could have been just a normal baby, walking, talking, eating out of a bottle, or just playing. We wouldn't be sitting here today if she had that test done at birth," said Vicky.Links: