Champions of the Foundation

Meet Maddie

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

  • Loves everything Disney
  • Enjoys skiing, swimming and hand cycling
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Not many children have to make difficult and life-impacting decisions at a young age when they should be playing and enjoying life, but Maddie did. The decision to have a colostomy at age 8 and then to amputate both her legs at age 10 required courage and resolve of this amazing young girl.

Maddie was born in Colorado with Caudal Regression Syndrome/Sacral Agenesis. It meant her spine was not going to develop properly. It’s rare and happens to only about one in every 60,000 children born each year.

What affected her spine also affected her legs. They essentially were stiff and didn’t work at all, causing her life difficulties such as having to stand on long plane flights because her legs would not bend.

Through 79 surgeries and more to come, Maddie has learned to be upbeat and cheery. People ask her, “If you had the opportunity to not have a disability, would you take it? I tell them I wouldn’t. It makes me different and has shaped who I am today, and I like who I am.”

To help with the practical needs, the Courageous Faces Foundation arranged for her to have a mechanical platform lift installed to give her access into and out of her home, as well as a roll-in shower so she could live a more enhanced life and gain valued independence. She calls it freedom. Approaching early adulthood, now she can go out with friends without having them do everything for her. She even jokes around not about her disability, but her different abilities to ease tension and show others it’s OK to talk about them—especially with those in her college classes. She says, “Using humor really gets me through the tough times and shows people not to be afraid of my condition.”

Most recently, Maddie’s intention has been to expand her modeling and acting aspirations and was featured in a photo shoot with her close friend and Inspirational Face of the Foundation, Hannah. And, yes, she admits she’s dreamed about someday becoming a Disney makeup artist. With her drive and ambition, who knows?

Things I want you to know about how to treat people with a difference:

  • Treat people with disabilities just how you would treat anyone else
  • Don’t ask me 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

Things I have learned along the journey of having a disability:

If you have a medical condition, have a sense of humor about it. It helps get you through the tough times.

Why Maddie is thankful for the Courageous Faces Foundation:

I love the Courageous Faces Foundation because it helps teach that people with medical differences are just like anyone else. The Foundation helps 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.

They have also provided me with an ADA accessible platform lift and new roll-in shower which has given me expanded options, independence and security. Through the Foundation, I have been given amazing experiences and opportunities and I’ve been able to enjoy some of the deepest and most loyal relationships ever.

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