Madison Thompson had her first of 11 surgeries at two weeks old. Her stomach was swollen with what doctors thought were huge cysts. But even after they operated, the Wellington resident’s pain continued, and she visited 57 specialists over the next 16 years before doctors finally figured out what was wrong.
Thompson has a rare, inherited disease called mucolipidosis; in her specific type, an enzyme neglects to tell cells where to dispose of the substances they don’t use, so the material ends up in her skeleton and organ system, causing pain and physical impairment. There is no cure.
A year before Thompson received the official diagnosis, one of her doctors offered another epiphany: If she was going to endure this discomfort—both her body’s physical agony and the slog between different physicians—she needed to be an advocate for herself. “Over the course of my life, I’d realized that doctors aren’t taking the time to teach youth to be advocates,” Thompson says. “For pretty much my whole life, I had been [my own advocate], but I never really understood what that meant until then.”
Three years later, Thompson has made self-advocacy her life’s work. In April, the 18-year-old created her own nonprofit, the Sweet Destinee Foundation (named for her former therapy horse). She and her family have spent the last few months traveling to hospitals and schools nationwide to give presentations on advocacy to chronically ill youth and young adults.
On December 7, the foundation will host its first Giving Gala, a fundraising event at the Fort Collins Senior Center to introduce the organization to the public. “For anyone, self-advocacy is important,” Thompson says. “For someone who has a condition, it’s even more important because when it comes to your own health, you need to make really big decisions and you need to know how those decisions impact how you go forward in the future.”
Although her family helps her present the seminars and workshops, Thompson developed the self-advocacy curriculum—which includes themes such as confidence, determination, and follow-up with health care providers—on her own. Her experience interning at youth-focused nonprofit Colorado9to25, serving on the Youth Advisory Council at Children’s Hospital Colorado, and making regular visits to Front Range Community College for talks with nursing students on the importance of patient advocacy all helped her define her career path early. Because the average lifespan for those with her disease is 30 to 35 years, every moment is crucial.
But Thompson has more she wants to do. Her next project? Opening a dance studio for kids with limitations that might prevent them from attending standard dance classes. “I really liked to dance when I was younger, but I had to stop because of my illness,” Thompson says. “I want to make it so that no one has to stop doing what they love.”
For more information on the Giving Gala, visit the Sweet Destinee Foundation at sweetd.org.
Follow assistant editor Mary Clare Fischer on Twitter at @mc_fischer.