Rarely does a day go by where I am not brought to tears because of the realities of Krabbe and the destruction it brings to its innocent victims – my own daughter included in those ranks.
I remember my grandmother telling me to never use the word hate because it meant that you wished someone/something didn’t exist.
I definitely think hate is the appropriate word for how I feel about Krabbe.
I think what I hate the most is the fact that you have no idea that anything is wrong with your child for a long time.
You think your baby is developing normally, they are happy, and then all of a sudden it goes away. The pain sets in, your child is miserable, and you will never see them smiling again.
Krabbe is terrible because it is both a sudden change and a long progression before death.
Our Tori was taken from us within one week. ONE WEEK. And we had NO idea what was happening.
Everything was explainable with a theory. Growth spurt. Teething. Reflux. Hydrocephalus.
Nope. None of the above.
I think what I hate the most is that the first things it took from her/us was her smile, her laugh, her voice. Her personality. Her.
It has been a rough two days as she continues to struggle to swallow, and as she continues to throw up small amounts through her mouth despite the Nissen procedure. I have had to suction her many times this morning so that she didn’t aspirate or choke on her own saliva and phlegm.
This disease sucks.
I don’t know how we are going to get through the rest of her life if this disease continues to get worse.
The fear that surrounds us grows daily as we are now afraid to leave her unattended for any length of time. Even sleep was difficult last night because I was afraid that I wouldn’t hear her coughing in time to suction her.
Krabbe sucks. And the fact that over forty states do not screen for this at birth is infuriating. No child or parent should have to go through this. No one.
Please pray for Tori…pray that she will swallow and not aspirate, that she would be comfortable and not in any pain.
Please pray for Brennan and me…for wisdom, calm hearts, and patience.
And please contact your state representatives and senators about adding Krabbe to the Newborn Screening Tests.
This disease must be stopped.