THIS fact is why we continue to fight for Newborn Screening for Krabbe.
Every baby deserves a chance at life. We have the technology to detect the disease AND effectively treat it if caught at birth, and yet only SEVEN states are screening (that slide is coming).
Owen, Tygh, Ezra, Michael, Lennon…these five babies were transplanted EARLY and are thriving! We won’t stop fighting until every baby is given the same opportunity for life. After all, we would have done anything possible to save Tori, and we want every parent to have that chance.
Over the next few days you will learn about each type and how it presents. Our daughter had Early Infantile Krabbe.
Our daughter, Tori, first lost her smile at five months; she never got it back.
We have seen Krabbe babies of every color. While it is most prevalent in Scandinavian and Jewish populations, it exists in every race.
When Tori became symptomatic with Krabbe it looked like reflux. Her doctor started her on meds but they didn’t work. That led to a hydrocephalus theory that led to a CT scan that led to an MRI and correct diagnosis.
