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.
Tori began to show symptoms at five months. Krabbe hit fast and hard, and it robbed her of her smile, and other abilities, immediately. She went to Heaven at 20 months.
But, it didn’t have to be this way. Later this month you will learn about the importance of Newborn Screening and the treatment that is possible if Krabbe is caught at birth.
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.
Nerves control everything – even smiling. We treasure the smiles from our sons so much more because of this.