Parents of children diagnosed with life-threatening diseases too late to receive treatment are calling on Pennsylvania lawmakers to mandate more medical tests for newborns.
In 1997, former Buffalo Bills quarterback Jim Kelly became a scared dad.
It was the year his son, Hunter, was diagnosed with Krabbe leukodystrophy — but too late to fight the disease’s symptoms, which reduce life expectancy to as little as a year and a half.
Hunter died at the age of 8, and now Kelly is a determined dad, campaigning across the country to demand that newborns are tested for Krabbe and other diseases.
“When Hunter was born in the state of New York, they were testing for 11 diseases. Mississippi was at 45, Illinois, 51. So many states were testing more than our state of New York, where I’m living now,” Kelly said Monday. “As a matter of fact, Pennsylvania is one of the worst for mandated testing for diseases.”
The NFL Hall of Famer said the key to treating diseases such as Krabbe is to make sure children are tested at birth.
Vicki Pizzullo of Bucks County also urged lawmakers to mandate the testing. Her 9-month-old daughter, Hannah, was diagnosed too late to receive treatment.
“Most parents with babies Hannah’s age are planning their first birthday parties. I can’t help but wonder, will we be planning her funeral?” she said, struggling to hold back tears. “All this could have been prevented by a simple blood test at birth. By the time most babies are diagnosed with this disease, it’s too late.”
Pennsylvania requires newborns to be tested for six genetic and metabolic diseases and recommends testing for another 22 diseases.
State House lawmakers say they have the support of Gov. Tom Corbett in their push to expand the list of disease testing required for newborns.
They estimate the added cost per baby to be $36, and say insurance companies will be asked to cover the screening.