this is what amc looks like

Today, June 30, is AMC Awareness Day.  And what is AMC?  Arthrogryposis Multiplex Congenita (AMC) is a rare muscular/skeletal disorder that results in joint contractures and visible deformities.  There are many different varieties, but if it occurs, it does so in utero.  My daughter Ally has it, and I’ve discussed it here and here.

 

When Ally was born, several health professionals, some with advanced medical degrees, told us:

 

“She won’t live past her first year.”

 

“She won’t ever walk.”

 

“She probably won’t ever talk.”

 

Ladies and gentlemen, Alexandra Jane Kilgore at 15 years of age:

 

 

  • Going into 10th grade at her high school

 

  • 3.667 GPA

 

  • Student Government Association Treasurer for Class of 2017

 

 

 

 

  • Former member, Kent Island High School and Matapeake Middle School marching bands (trombone)

 

 

 

  • Member of church choir

 

  • Enjoys swimming, reading, arts and crafts, drawing, painting, and fashion

 

  • Wants to study law at the University of Chicago to become a prosecutor…and eventually President of the United States

 

  • And yeah, she walks.

 

This is what a person with AMC looks like.  And this, despite what some people—even those with advanced medical degrees—may think, is what a person with AMC can do.  And be.

 

 

Kenton Kilgore is the author of DRAGONTAMER’S DAUGHTERS, a two-part young adult fantasy novel based on Navajo culture and belief.  Look for his next work, LOST DOGS, a young adult  sci-fi novel, coming this summer.

 

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5 Responses to this is what amc looks like

  1. Leanne Dyck says:

    Thank you for telling me about Alexandra. Hers is an amazing story. And she stands as an example for us all.

  2. Robin DeMaso says:

    Ally is full of awesomeness! Love her, her humor, and her spirit!

  3. Vikki Brownley says:

    Ally is such a sweet young woman! Our family loves her and we know she will make an awesome prosecutor!

  4. Nancy Koval says:

    Ally Jane is an inspiration, as are her parents and her sister. A great family!

  5. Linda Woodall says:

    I remember the first time I saw Ally in elementary school. I didn’t know her at all, but my heart went out to her and her family. Now after having the privilege to have known her in high school – watching her onstage in the high school plays, dancing singing and acting, and seeing her marching in the parades with the band, I am honored to know her! She’s a normal, beautiful high school young lady and a great inspiration to all of us!