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According to the Genetic and Rare Diseases Information Center, in the United States a rare disease is defined as a condition that affects fewer than 200,000 people. The definition was created by Congress in the Orphan Drug Act of 1983.
Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. The Orphan Drug Act created financial incentives to encourage companies to develop new drugs for rare diseases. The rare disease definition was needed to establish which conditions would qualify for the new incentive programs.
Courageous Faces was founded by Trish Morris in 2014. After retiring from the world of finance, Morris volunteered with special needs people through the Rocky Mountain Special Olympics teams. She realized people with rare medical conditions didn’t have as much support from the community as people with well-known conditions. Morris took to social media in search of people with rare medical conditions, and began contacting them to offer support and networking.
The foundation currently has 17 “Faces” and advocates for more than a dozen rare conditions. To learn more about the Courageous “Faces,” visit https://www.courageousfacesfoundation.org/.
If you ask Parker resident Maddie Teagarden what happened to her legs, and why she’s in a wheelchair, you might get the answer “shark attack.”
The good-natured 20-year-old, who had both of her legs amputated when she was just 10 years old, said she doesn’t mind curious people asking her about her condition, but sometimes can’t resist the urge to tell them she was attacked by a shark, just to see their reaction.
“I always tell them I’m just joking, but the look on their faces is pretty funny,” said Teagarden. “You have to be able to laugh, and joke, no matter the situation.”
It’s Teagarden’s positive attitude that earned her the honor of being a “Face” for the Centennial-based nonprofit Courageous Faces. The foundation provides support and services for people who have rare medical conditions, including Teagarden, who was born with sacral agenesis/caudal regression syndrome (SA/CRS). Courageous Faces was created to help fill immediate needs of people with rare conditions, and helped Teagarden recently by adding a wheelchair ramp in the garage of her home, and a shower that she can access using her wheelchair.
SA/CRS only happens in 1 of 60,000 children born each year. As Teagarden grew in the womb, her lower spine didn’t develop properly, causing problems with her organs and affecting the development of her legs. She has had 75 surgeries throughout her life, but said the challenges are just part of who she is.
“I actually like having a disability. It makes me different and made me who I am today, and I like who I am,” said Teagarden. “I’m just like any teenage girl; my life is not better or worse than yours, I just have to live my life a little differently.”
“Maddie is an amazing young woman,” said Trish Morris, founder of Courageous Faces. “Her attitude, and her sense of humor, is truly, truly incredible.”
Teagarden has always taken an active part in her medical care, including making several major decisions that were not necessarily supported by the medical community. At the age of 8, because of the SA/CRS, she was unable to determine when she had a bowel movement. Unhappy with the situation, she asked for a colostomy, which would remove the need for protective underwear and unwanted bowel movements. After a compelling argument, Teagarden got her wish, and said it was one of the first steps to independence.
At the age of 10, she made the most difficult decision, which was to have both of her legs amputated.
“They just hurt all the time, and I couldn’t bend them. If we went on a plane I had to stand the whole time. It was holding me back, so we went to see about surgery just to be able to bend them, and there was really nothing they could do,” said Teagarden. “I just knew they had to go. In fact, I didn’t even realize how much pain they were causing me until they were gone.”
Another step in the direction of independence, she said.
“It was more freedom. I could go places and do things that I couldn’t before.”
Teagarden’s next fight included convincing doctors, hospital administrators and the State of Colorado that she needed a hysterectomy. She suffered severe pain for three years, which confined her to bed. The source of her pain was the development of her female organs, which were growing and crowding other organs. Medical officials were reluctant to remove the organs, because of her young age and the fact that the surgery would render her infertile.
“I’ve always known that I’m not going to give birth to my own child,” said Teagarden. “I’ve always planned to use a surrogate or adopt. It was frustrating, but eventually they did the surgery, and I wasn’t in pain anymore.”
Throughout her surgeries and medical episodes, Teagarden continued attending school at Ponderosa High, and was able to graduate on time. Now she spends time hanging out with her best friend Marissa, going to the mall, watching “Stranger Things” and going out for sushi.
As a “Face” for the foundation, Teagarden serves as an ambassador to raise awareness for people with rare conditions. She travels to conventions and speaks about SA/CRS and her life. She is thinking about adding activist, and maybe actor, to her resume.
“I am really mad at the media, and the fact that when they portray a person with a disability in the movies, they don’t actually use actors with disabilities,” she said. “Young girls don’t have a real representation to look up to.”
Teagarden said she loves all things Disney, and hopes to one day work at Disney and be a makeup artist.
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