I’ve already posted about this on social media and on LDNBS.org but it felt necessary to also include it here because this is a monumental day.
Today Pennsylvania became the ninth state to screen every baby for Krabbe at birth.
When Tori was diagnosed there were only two states screening for Krabbe: New York and Missouri. We’ve watched as others have added it, cheered the families along and helped when we could. But for Pennsylvania it felt like it may never happen. It took four pieces of legislation (two of which failed), over the course of seven years, and two determined mothers to make this a reality:
HB1654/Act 148 of 2014 (Hannah’s Law)
HB1081 (our first attempt to fix things/implement Hannah’s Law; failed)
HB730 (numbered for Tori’s birthday; failed)
SB983/Act 133 of 2020
And now it is finished. Not only did we implement Newborn Screening for Krabbe, but we also paved the way for future conditions to be added without legislation. These decisions should not be made by politicians unless required by the state, and we made sure that in Pennsylvania the Newborn Screening Advisory Board has the authority they should.
On Sunday I wrote this:
“Every baby born in Pennsylvania today will have their #NewbornScreening done tomorrow, which means that these babies will be the first to have greater screenings than ever before, thanks to #SB983 (which became #act133). Every baby born TODAY in Pennsylvania will be screened for #Krabbe and many other conditions that weren’t previously done here. And it won’t matter anymore where they are born because every baby born in Pennsylvania today will be screened equally, regardless of ZIP code.”
The impact of Tori’s life is greater than I ever could have imagined. I’m so grateful to be her mother, to have had this be my calling in life, and to now have the opportunity to continue to mentor others as they seek to add conditions to their state’s Newborn Screening panels. There are parents in the future who will receive the news that something was found on their baby’s Newborn Screening and those babies will have a chance at life – a chance Tori didn’t have.
Today I’m just grateful. Grateful for all the experiences that perfectly prepared me for this battle, thankful for the amazing people God put in my path to make SB983/Act 133 happen (John Nikoloff, Greg Moreland, Ashley McCahan, Rachel Romanofsky, and Jonathan Humma, to name a few). Thankful for Brennan who supported me every step of the way even though he wasn’t in the spotlight very often – I could not have done this without him. Thankful for all of the Pennsylvania Krabbe families who were willing to tell their stories to their legislators.
More than anything, I’m grateful that Tori has a legacy. A life-saving legacy. ❤
Pennsylvania’s nickname is the “Keystone State” because it held things together at the beginning of our nation, and that nickname is fitting even now because it connected the states that are screening:
We have a long way to go, but I feel hopeful that by 2025 we will have many more states filled in on our ever-changing map.