Today marks six months since we have seen Tori smile.
It took us about a week to realize that she had stopped smiling, playing, laughing, and when we did we assumed it was temporary. A growth spurt. Teething. Not a terminal disease.
She has now been sick longer than she was healthy.
She had Krabbe from conception, but it didn’t show up until around January 7th, 2015.
It hit fast and hard. We didn’t even know what was happening.
Today also marks five months since we received the news that she had a type of leukodystrophy. It would be another week before the word Krabbe would enter our vocabulary.
I’ve never hated a word more in my life.
If caught early, before symptoms occur, they can treat Krabbe with a high success rate.
This is why it is so vital that Krabbe be added to the Newborn Screenings in each state.
How can you help?
It’s truly a matter of life or death for these precious babies.
Too many babies have already lost their battle with Krabbe. Let’s do our best to stop Krabbe in our lifetime!