June 24, 2016
BENEFITING: The Charcot-Marie-Tooth Association
"My nerves don't let me breathe so well or walk." -- Julianna Snow, age 5
I’ve never tried to raise money for anything before, and I’m not a great fundraiser because I hate asking for money. I hate CMT more though — so I’m asking now. As usual, Julianna helped me put things into perspective.
Me: Julianna, what should I do? I want to raise a lot of money for CMT, but I hate asking people for money.
Julianna: But why? It’s for CMT…
Me: I know. But I feel bad. What if they don’t have much money?
Julianna: — [spoken as if she’s stating the obvious] — Mom, if people don’t have much money, they can give just a penny.
To most people, breathing and walking might seem completely unrelated. They don’t know about Charcot-Marie-Tooth (CMT) disease, which can damage the nerves that control both. In rare instances, the disease can be fatal. This is the case for our Julianna, whose CMT is life-threatening.
Last night, during a rare quiet moment:
Me: Julianna, what’s in that big brain of yours right now?
Julianna: I’m walking. On the sidewalk.
Julianna: I’m walking, and nothing is bothering me – except for Alex. I’m wearing my colorful skirt and colorful shirt.
Me: Where are you going?
Julianna: The playground, of course!
I am grateful for Julianna’s huge imagination but I wish that she didn’t need it to walk.
The CMTA is funding an aggressive research initiative to find a cure. We’re happy that going public with Julianna’s thoughts on choosing heaven over hospital has raised awareness about CMT. Now we’re asking people to please help us raise money for the CMTA.
We want to pay them back--and then some. Please give to the CMTA... even if only a penny. – Michelle Moon, Julianna’s mom
To learn more about Julianna’s story, visit Michelle’s blog at www.juliannayuri.com
Artist credit goes to Christine Stalie.
Photography credit goes to Charles Gullung.