Krabbe at First Sight

One year ago today we saw Krabbe in Tori for the first time. We only know this in hindsight – in the moment we had no idea why Tori was so angry.

She wouldn’t nurse. She seemed so angry that I had the audacity to try to feed her.

This wasn’t our Tori.

We couldn’t get her to stop this new, terrifying cry no matter what we tried. Now we know that she was in an incredible amount of pain due to the breakdown of the myelin.

And then she stopped. Our happy girl reappeared. She was fine until we put her in her car seat to go to a surprise birthday party for Brennan’s grandfather, and then she was fussy again.

Once we arrived she was back to her charming self and she met many family members for the first time.

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It would be the only time many of them would see her healthy.

I wish we had known that we should be more concerned. But, all the initial symptoms of Krabbe are easily explained away. And, once symptoms appear it is usually too late for a stem-cell transplant.

We would have about two more weeks with our healthy Tori before Krabbe would take up full residence in her brain.

If only she had been tested at birth…❤️

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