HARRISBURG — The mother in the black "Fight for a Baby" T-shirt carried a spiral notebook detailing her story of heartache to the podium in the Capitol Rotunda.
"I'm nervous," she said, adjusting the microphone to her 5-foot-4-inch height.
Then she read, telling lawmakers, strangers and an NFL Hall of Fame quarterback how her 9-month-old daughter Hannah went from a healthy newborn to a rapidly dying baby who would not eat or stop crying while regressing along the growth cycle.
"We went from toys to suction pumps," Vicki Pizzullo said.
Hannah has Krabbe disease, an often fatal inherited disorder affecting the central nervous system of 1 in 100,000 newborns in the United States. She is expected to live another four to 15 months.
"That story sounds exactly like my story," former Buffalo Bills quarterback Jim Kelly said. "Identical."
That's why Kelly, who along with his wife runs the Hunter's Hope Foundation in honor of their deceased son who died at 8 of the disease, came back to his home state of Pennsylvania on Monday. Kelly lent his name, support and shoulder to Pizzullo and other parents who are asking the state Legislature and Gov. Tom Corbett to pass two House bills mandating that hospitals screen newborns for Krabbe Leukodystrophy and 27 other diseases.
"Krabbe is a horrible disease, and even though Hunter defied all expectations by living to be 81/2 years old, he still suffered every day of his life," Kelly said. "I urge all of Pennsylvania's lawmakers to work together to make Hannah's law a reality, giving all babies the chance for the healthy life they deserve."