{ Where The Heart Is }

Kids Who Care

The Sweet Destinee Foundation

Wellington teen Madi Thompson harnesses the power of possibility to start a nonprofit teaching chronically and terminally ill youth to embrace the art of advocacy.

BY carrie Visintainer

It’s dawn on a chilly Monday morning in Wellington and Madi Thompson flicks open her eyes. Taking a deep breath and sitting up in bed, she pushes her blond hair behind her shoulders and stretches her achy hips. Actually, all of her joints hurt badly this morning, and a big part of her wants to stay in bed, calling down the hall to her parents to let them know. But she pushes to standing, because she can’t ignore the truth: she has a to-do list a mile long. It tells her to work on a grant. Email a member of her board of directors. Make some website updates. Get things in order for an upcoming fundraising event, where she’ll be speaking. It’s a routine list of action items, perhaps, for the front woman of a nonprofit.

Yet there are several things that make Thompson unique. First off, she’s 19 years old. And then, she has a rare disorder called Mucolipidosis (ML), an inherited metabolic disease where abnormal amounts of lipids accumulate in her body, causing cell damage. The symptoms range widely among those affected, and in Thompson they’ve manifested largely as ongoing skeletal issues and severe pain. She walks unassisted for short periods of time but requires a wheelchair for longer spans.

The medical issues were detected by doctors shortly after Thompson was born, and she had her first surgery when she was two weeks old. But this didn’t correct the problem. It took 57 specialists, four misdiagnoses and 16 years to get to the bottom of things. Finally, after multiple surgeries on her hands, two knee replacements and two hip replacements, her new doctor, a fellow in genetics at Children’s Hospital, committed to figuring out what was wrong. “He was the first person who looked at me and said, ‘I don’t know what this is, but I’m going to help you find out,’” says Thompson. The doc asked her lots of questions and did a panel of blood tests; one of them provided a definitive diagnosis for ML.

Thompson calls this doctor “her saving grace,” but by this she doesn’t mean saving her life. There is no treatment for ML, no cure, and the disorder is terminal. She matter-of-factly says she doesn’t expect to live much past age 40. However, his approach was so different, so unexpected, that it made her think of a word. Advocacy. “He looked me in the eye,” says Thompson. “He talked to me.” It made her realize how frustrated she’d been over the years, sitting in doctors’ offices watching the professionals converse with her mom. Inside she’d think, Wait, but I’m the one that’s sick. You don’t understand what I go through on a daily basis. She realized she’d been wanting to advocate for herself but had no idea how.

Except now she got it, she understood and it was empowering. And she knew plenty of other youth could benefit from hearing about her experience. In this spirit, she outlined an idea for a nonprofit as her senior homeschool project and named it Sweet Destinee, after a therapy horse who “was a friend when I needed one.” Thompson and her mom filed official paperwork this spring with the mission to help chronically and terminally ill youth, young adults and their families develop self-expression through self-advocacy. “I really want to travel the world and teach youth to be advocates for themselves,” she said. “You have to decide what it means for you. What it means for me is that I can do things on my own. I am more powerful than I originally thought I was.”

In order to accomplish her mission, Thompson knows she needs to talk to more than just patients. The issue is clearly multilayered, so she’s developed different facets of her program, including creating seminars for patients’ caregivers and those in the medical field such as doctors, nurses and social workers. She encourages to: “Get to know your patients. Have a conversation with them. The more you know about them, the more they can grow.”

Thompson’s goals are lofty: to reach as many youth, parents and medical professionals as possible, giving power back to the people who don’t think they have any. And she knows time is of the essence. Which is why, even on the toughest of days, when her pain compels her to do nothing, she tries to tackle a few things from her to-do list. She moves forward, one step or one push of her wheelchair at a time, repeating the mantra that has changed her life and is bound to transform others: “We are more than our illnesses. We can definitely do more.”

Want to get involved?

If you’d like to volunteer or make a donation to Sweet Destinee, please visit thesweetdestineefoundation.org.