It’s impossible to describe the moment when you learn that your daughter is fighting for her life.
Think about that for a moment.
The first time I met Marian was via text.
Eli sent her photo.
She looked really similar to my daughter.
At least, in that moment, she did.
It was a moment where I completely lost it and, for a split second, it felt like MY reality.
MY daughter fighting a terrible disease.
Childhood Alzheimer’s a.k.a. Niemann-Pick Type C.
And there wasn’t anything I could do about it.
It was gut wrenching, crippling and horrifying.
That split second that felt like an eternity. A VERY REAL momentary lapse of reason.
On February 28, 2017 the results of the whole exome sequencing came back, positive for NPC. Fatal.
Think about THAT for a moment. Fatal?!?!
I’m losing my shit over cream cheese on the couch and spilled juice.
Meanwhile, Sara and Paul are trying to wrap their head around exome sequencing and a FATAL diagnosis for their two-year-old…
I got an idea, Dave, shut your yapper, you’re doing alright.
Your kiddo is doing just fine in comparison.
So what if she won’t put her shoes on every morning before school.
Last time I checked, she doesn’t have to get a spinal tap every two weeks.
I’m humbly asking you take the next 2 minutes and 14 seconds of your day to Meet Marian:
Marian is a warrior.
A cure for NPC is within reach but she is in serious need of your help.
Every ounce of effort matters.
Please take the No Pucker Challenge. What’s that you ask? Well….
For more information about the family fighting for a cure and Niemann-Pick Type C, please visit www.hopeformarian.org.