Today marks six months since we have seen Tori smile.
We only know the date because of this picture and the others from that day.
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.
Tori was always so happy and full of personality.
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?
Please contact your state representative and senators, donate to Krabbe foundations like Hunter’s Hope and Judson’s Legacy, tell others about Krabbe. Pray.
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!
6 thoughts on “The Day Before Krabbe…”
Thanks for keeping me on the updates. We continue to lift up your family. Many Blessings, Deb ParadisNow faith is the assurance of things hoped for, the conviction of things not seen. Hebrews 11:1
“Faith expects from God what is beyond all expectation.” ~ Andrew Murray
My heart breaks with you. Our time line was different but I remember all to well seeing pictures of the before, when Claire was a healthy and typical child. Is there a certain month or day that is dedicated to awareness for krabbe or is it just best to write legislatures when I’ve got the time?
How do I find out if it is included in the newborn screening for my state? For any state? If they are already taking blood for all the screenings they do (I distinctly remember them milking my daughter’s tiny foot for blood), what’s the big deal to add a test for Krabbe? Why don’t they just add it!? Pardon my ignorance, just want to understand what I should be writing to the appropriate parties for my state. Seems like a no-brainer to test for something so horrific when the results could be life saving!!
Thanks for sharing your journey. I read your posts and sob with (and for) you, and pray whenever I think of you. XOXO
Six states currently have legislation in place but not all of them screen yet. Huntershope.org has info about all of the states 😄
And it comes down to money, from what I understand 😕