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
- Three-time Carson Scholarship winner
- Member, International Thespian Society
- Former member, Kent Island High School and Matapeake Middle School marching bands (trombone)
- Volunteer, Queen Anne’s County Teen Court program
- Volunteer, Animal Resource Foundation
- 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.