FOX43 has been following the story of a Dauphin County girl fighting Krabbe Disease, which is a form of Leukodystrophy. Shortly after her second birthday, baby Jaylah passed away.
Her grandparents cared for her around-the-clock; now they care for her grave-site. “I try and come out here twice a day usually after work, and then I try to be here every night because I always sing goodnight to Jaylah, and I still continue to sing goodnight to her,” said Jaylah’s grandmother, Angel Custer.
Jaylah’s grandparents are pushing for testing at birth, which could have saved baby Jaylah. Early screening can sometimes change the course of the disease.
State Representative Angel Cruz, (D) 180th District, introduced a bill that would add Krabbe Disease and five others to a list of genetic diseases that hospitals must screen for in newborns.
Leukodystrophy Awareness Month
With September being Leukodystrophy Awareness Month, Representative Angel Cruz is urging the Senate to consider a bill that deals with newborn screenings.
“I get a little frustrated because it passed unanimously in the House. It went to the Senate and it’s just sitting there. Our governor is ready to sign this, what is the holdup?” said Rep. Cruz.
“We deserve better than this, I feel that not only have I let Jaylah down, by not having any control over this, but our state let Jaylah down, and they are letting every other child down who went through this,” said Custer.
According to Erik Arneson, spokesperson for Senate Majority Leader Dominic Pileggi, we could see a vote soon. “This bill is under active review and could be voted before the session closes in October,” said Arneson.