Lesa Brackbill is a wife, mother, advocate, and author raising awareness about Krabbe Disease.

Her daughter Victoria was born in July 2014 and began exhibiting symptoms of Krabbe Disease in January 2015.

“She was perfectly healthy, so we thought. And it wasn't until she was five months old that everything changed. She became a completely different baby. It was it was kind of like a light bulb or a light switch had been flipped. She had stopped smiling, talking, laughing, playing, you name it. And we were like, first time parents. Is this, okay? Like, I don't think so. So, we began to pursue answers, but we never, ever would have dreamed that we would receive a diagnosis like Krabbe disease, which is fatal. And so, on February 13th, we were told that our six-month-old daughter was dying.”

Lesa soon found there was no cure for Krabbe, and treatment could’ve began at birth. However, Victoria was not screened for Krabbe when she was born.

“When I think back to diagnosis Day, I think about how when we were pleading with the neurologist for something that we could do because we were like, it's 2015, what do you mean? Our daughter's dying and there's nothing you can do. And she said, if they had caught it at birth, they could have treated it.”

 

Victora passed away on March 27, 2016. In her honor, Lesa has devoted her time to advocating for newborn screening of Krabbe, and raising awareness of Krabbe Disease. She’s even strengthened the Newborn Screening Program through Act 133 that was signed into law in Pennsylvania in 2020.

 

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