Lesa and Brennan Brackbill of Hershey have endured something no parents should—the death of a child.

Their daughter Victoria (“Tori”), born in July 2014, passed away on Easter Sunday 2016, 14 months after being diagnosed with a severe neurological condition called Krabbe (“crab-ay”) disease. Even though Tori’s time on earth was short—fewer than two years—her mother Lesa is determined to create a lasting legacy by advocating for changes to Pennsylvania’s newborn screening laws that could have prevented Tori’s death.

A Loss, a Purpose: Hershey woman advocates for greater newborn screening laws, TheBurg, July 2018