Levittown girl’s fight for life inspires new law

When Hannah Rose was born on January 15, 2013, she was a healthy baby girl, 8 lbs, 11 ounces. Her mom Vicki Pizzullo of Levittown said that at first she was meeting and exceeding her milestones and that there was no sign of what was to come.

Then suddenly at 4 months of age, Pizzullo noticed that Hannah seemed to be regressing. "She became irritable and didn't want to be held and then she started to have trouble eating because she lost her ability to suck," she said.

At first the pediatricians just thought she had acid reflux, but Hannah's parents felt deep inside that something else was wrong with their little girl. Within 24 hours of taking her to Children's Hospital of Philadelphia, Pizzullo and her husband Justin Ginion found out on June 17, 2013 that Hannah who was just shy of being 5 months old had Krabbe Disease, a neurological disorder that affects the production of myelin, which creates a protective sheath around the brain's nervous system. Without this protection, brain cells and nerves are slowly poisoned causing blindness, deafness, and muscle stiffness. Most babies diagnosed with Infantile Krabbe disease don't live past their second birthday.

This is a rare disease that still so many people are not aware of. One person in every 100,000 is diagnosed with it.

"When both parents carry the glycosylceramidase gene (GAC) they have a 1 in 4 chance of their child having it," Pizzullo said. "But you don't know if you have the gene unless you know to look for it."

Hannah will be 20 months old on September 15. She has a feeding tube, a loss of muscle control and suffers from blindness and respiratory issues. She can't smile or laugh or play catch with her Dad, but she is a fighter and her family keeps hope alive.

Pizzullo and Ginion make her as comfortable as possible with pain medicine and round the clock care and they find their own unique ways of connecting to her.

John Neal, who was inspired by Hannah, has become a strong supporter and friend of the family shared the story of how one Sunday Hannah's dad set her in his lap and guided her arms to catch the ball her mom was gently throwing to her all the while they both cheered her on. Neal also said that Hannah loves Elmo so one day he brought her an Elmo pillow from Sesame Place after a trip there with his kids. Although Hannah can't see Elmo, she can hear and feel him.

"Every day that she is here, we are blessed," said her mother. "We are happy for every bit of time we have with her."

When asked how she pushes through the daily struggles and emotional heartache, Pizzullo said that they survive on hope. Hope that a cure can be found before it is too late for Hannah and hope that they can prevent other families in Pennsylvania from going through what they have endured.

What makes this story even more tragic is that although there is no cure right now for Krabbe's, if caught before symptoms present themselves, a cord blood transplant could have given Hannah a chance for a long, healthy life.

Today, every newborn baby is screened for certain diseases and disorders before they leave the hospital with a simple heel-prick test. Krabbe's disease is unfortunately only screened for in New York and Missouri. Illinois, New Mexico and New Jersey (where Hannah was born) have passed laws but have not implemented them yet.

Pizzullo and Ginion have been working with Pennsylvania state representative Angel Cruz and the Hunter's Hope organization to get Hannah's Law passed in Pennsylvania so that all newborn babies can be screened for Krabbe's disease while there is still time to help them. Hunter is the son of Hall of Fame quarterback Jim Kelly who died when Hunter was eight years old. When he was diagnosed, his family set up Hunter's Hope to raise awareness of the disease and to help get universal newborn screening passed starting with where they lived in New York.

Hannah's Law (HB1654) has passed the House of Representatives and the Senate Health Committee and once they are back in session, the Senate will vote. If passed, the law will then go before the governor.

Hannah's family is asking for your help to get this law signed. It is easy to do. Hunter's Hope has a link for Hannah's Law where you can send a letter to your local representatives. Expect to receive a letter back from them.

"Over a thousand letters have already been sent," Pizzullo said. "The support is wonderful."

You are also encouraged to like Hope for Hannah on Facebook to learn more ways you can help the family. Pizzullo posts about Hannah daily, giving everyone a glimpse into their world.

Recently the Phillies reached out to the family and invited them to a game on Friday, Sept 26. They will get to see batting practice and meet some of the players and the Philly Phanatic.

"We are very excited," said Pizzullo. "We are really hoping that Hannah will be well enough to go with us. My husband Justin is really looking forward to taking her. We have to do these things earlier because we don't know how much time we have with her."

To help raise awareness of Hannah's Law and to show Hannah some love, the family is inviting all their supporters to get tickets to the game and to wear navy blue in solidarity. On the facebook page you can buy a Hope for Hannah t-shirt or just wear a navy blue shirt to the game. Help them BLUE OUT the stadium in honor of Hannah.