Maddie’s Story

Faces of the Foundation:
2017

Condition:
Caudal Regression Syndrome/Sacral Agenesis (SA/CRS)

Resources:
International Sacral Agenesis/Caudal Regression Association

Resources:
NIH

 

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Meet Maddie.

I was born August 13th, 1997 in Parker, Colorado where I still live. I have 2 brothers and 2 sisters, 1 step-brother and 2 step sisters.

I was born with Caudal Regression Syndrome/Sacral Agenesis (SA/CRS). This means that as I grew in the womb my lower (sacral or caudal) spine didn’t develop properly. It is very rare and only happens in 1 of 60,000 children born per year.

SA/CRS affected the development of my legs as well and I use a wheelchair. I have prosthetic legs and crutches that are decorated with really cool Disney designs for when I have physical therapy. I’ve had 75 surgeries, and have had to make many huge, life-changing decisions since I was very young. When I was 8 years old I decided to have a colostomy. At 10 I made the biggest decision, which was to have both of my legs amputated. I had a very special Disney trip right before that major surgery after living in bed for 3 years due to pelvic pain. Even though I missed 3 years of school, I will be graduating from high school only one semester late!

Some of my favorite things are doing makeup, drawing, listening to music, and watching YouTube, TV, and movies. I love anything Disney. I also love to ski, swim, and ride my hand cycle. Whenever I’m in the hospital, I’m glued to the Ellen DeGeneres Show. I hope to eventually work at Disney and be a makeup artist.

I actually like having a disability. People ask me if I had the opportunity to not have one would I take it, and I tell them I wouldn’t. It makes me different and made me who I am today, and I like who I am. I’m just like any other teenage girl; my life is not better or worse than yours. I just have to live my life a little differently. I’m so thankful for my supportive family who have always treated me like everyone else. My mom especially has shown me it’s okay to be different and joke around with it. Using humor really gets me through the tough times and shows people not to be afraid of my disability.

I have some things I want you to know about how to treat people with a difference, and things you can do if you have one (or several):

  • Treat people with disabilities just how you would treat anyone else.
  • Don’t just assume and ask when I’m going to get better and be done with surgeries because I will have surgeries and health problems for the rest of my life, and I’m okay with that.
  • If you have a disability, have a sense of humor about it. It helps get you through the tough times.

I love the Courageous Faces Foundation because it helps teach that people with disabilities are just like anyone else. They help us all live our best possible life. I’m very excited to help raise awareness of my rare condition with the help of the Foundation.

Maddie’s Photos

Maddie’s Blog

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