Charcot Marie Tooth Disease - CMT Disease - Hereditary Neuropathy

HNF, in conjunction with Carol Liu and Marybeth Caldarone of Grace's Courage Crusade, are planning to produce Arlene on the Scene, a children's book featuring a young girl with CMT.   If you are interested in supporting the cost of producing the book, please click here. 
 
Following is a short synopsis and an excerpt from Arlene on the Scene.
 
Arlene has plans. Big Plans.  She’s going to become the youngest student government officer in Greenwood Elementary history. She’ll be the biggest thing to hit little Rhode Island since the invention of coffee milk.  Sure, she wears leg braces. But so did her mother when she was a kid. Having a disease called Charcot-Marie-Tooth shouldn’t stop either one of them, no matter how weird the name sounds.

 And so the campaign for Secretary begins. Kids choose sides, as they always do, and soon it’s boys versus girls, Arlene versus Carlos.
 But the election takes a wrong turn. The competition between the boys and the girls escalates into an intense war of alternating, vengeful pranks.
 
[from Arlene On The Scene…]
 
I figured I’d better switch strategies quick and try to lighten up the atmosphere. “But didn’t you say you named me Arlene because it means ‘courage?’ I’m a courageous soldier now. You can’t take me away from the front lines, just when the action is starting!” I slid off my bed and saluted Mom, with a serious soldier frown on my face, waiting for her to crack a smile.
 
I had to wait a long minute, but it worked. Mom’s finger lowered, along with her shoulders, and the faintest smile appeared. She shook her head. “Put your hand down, you crazy girl.” I lowered my arm and leaned against Mom’s chair. “But let me ask you something,” Mom said. “Why did you say you’ll look like a wimpy kid?”
 
 “Because…everyone else is all into this war thing. The girls are already planning the next attack. If I don’t go along, they’ll look at me like I can’t handle it.”
 
 “That’s what you think? That’s how you think people look at you?” Mom looked at her lap, then raised her eyes to a poster of a famous painting on my wall. “Honey, look at that picture there.”
 
It was a picture that was made up of little colorful splotches if you held your face right up to it, but when you backed away and looked at the whole thing, you saw a pretty bridge over a lake with all these flowers and stuff.
 
“This is one of my favorite paintings,” Mom said. “It was done by an artist named Claude Monet. I love the way you can see almost all of the paint strokes. You can really see the way the different individual parts make up a beautiful whole.”
 
 
“Yeah, it’s really cool, Mom.” I had always liked the poster, but how come we were suddenly talking about art?
 
 “People are like that, Arlene. There are the individual parts of us, which are very important, and then there’s the big, beautiful picture. I mean, sure, you and I have CMT, but that’s not the only thing there is to know about us.”  Her voice was really kind and soft now. “You are truly my courageous girl, but you’re also very smart and you know what’s right and what’s not. Some crazy boy-girl war or even this student election has nothing to do with your courage or your abilities.”
 
 
“Okay,” I mumbled. Mom leaned over to give me a hug. I draped my arms around her neck and squeezed her back. I sure did love my Mom, but right now, I totally disagreed with her.
 
This election had everything to do with everything. It was my chance to prove that I was just like everyone else, that CMT couldn’t hold me back.
 
 
Anyway, it was too late now. I was already involved. I was a budding celebrity from my PTA gig. I had a good shot at winning the election.   And if there was going to be a war, I wanted in on it.