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Family Advocacy Day Hero -- Meet Madison H.

Madison H., age 7 MadisonH.jpg
Hometown: Mankato, MN
Hospital: Gillette Children’s Specialty Healthcare, St. Paul, MN

 

Madison is a precocious first grader with a love of music. She knows the lyrics to every Taylor Swift song, participates in ballet, and learned to play piano before she could read.

Madison does all of these things from her wheelchair. Born without the lower part of her spine, she’s been coming to Gillette Children’s Specialty Healthcare since she was a week old. She has caudal regression syndrome, a rare congenital condition in which the lower spine fails to develop normally causing many issues, including bowel, bladder and leg problems.

Independence is important to free-spirited Madison. Unlike some children born with her condition, Madison doesn’t have heart, neurological or cognitive issues. In addition to surgeries, the children’s hospital has consistently supported Madison with assistive technology — like her first wheelchair at age 2 — which allows her to maximize her freedom.

Other children often ask Madison why she uses a wheelchair. She’s come up with a simple reply. “My legs don’t work like yours,” she says. “I was just made this way.”

 

Fact: Approximately two-thirds of all children with medical complexity are covered by Medicaid.


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