Madison 'Madi' Meyer, who fought against a rare genetic disorder, dies at 17

On a bright April afternoon, Madison Harriet Meyer lay slowly dying in her bedroom from a rare and debilitating disorder. Her breathing was shallow, and the muscles on her slight, 65-pound frame were barely strong enough for her to sit upright in bed.

Yet somehow, through sheer force of will, Madison, 17, mustered enough strength to change into a bright-blue dress and attend what would be her last prom. Under the bright lights of a high-school gym, Madison was rolling through the dance floor in her wheelchair as friends and classmates cheered her unexpected arrival.

Two months later on June 8, Madison, nicknamed Madi, succumbed to respiratory failure at her family's home in Farmington after spending most of her young life struggling against an extremely rare disorder, ataxia telangiectasia, or A-T, which attacks the body, causing progressive loss of muscle control and severely weakening the immune system.

"Some people let their disability define them and give up — but Madi never did," said her grandmother, Patricia Fenstermacher. "She squeezed every bit of life out of that little diseased body."

Ashley Ellefson, Madison's mother, had an unsettling feeling that something was wrong with her daughter when, at 6 months, she was unable to sit upright without support. When she started walking, she would wobble and sway unsteadily.

Ellefson had never heard of ataxia telangiectasia when doctors diagnosed Madison with the unusual disorder at age 3. She was one of about 500 people in the United States with the disorder. By age 8, Madison had to use a wheelchair to get around. Doctors told the family she likely would not survive past her early teen years.

Yet, Madison repeatedly defied expectations. She went crossbow hunting for deer with her father, who pushed her in an adaptive bike. She participated in a 5K race at Disney World and went on long boat rides with her grandparents. She also attended regular classes at Farmington High School, often staying when nurses were worried she was too weak to carry on.

"In my several years [of teaching], I never met a student who was so excited to come every day," recalled Heidi Yager, a teacher at the school.

Once, in fourth grade, a boy approached Madison in the cafeteria and began taunting her about her disability. Madison gazed into the boy's eyes and said slowly, "I'll eat you for lunch!" recounted her grandmother, laughing.

To Ellefson, an enduring image of Madison's willful determination was her empty wheelchair on the grass at Farmington High football games. On game nights, Madison didn't need the chair because she was too busy being hoisted in the air by her fellow cheerleaders — to the delight of the screaming fans.

"Madi never asked why she couldn't walk, or why she had A-T," Ellefson said. "She was proud of who she was."

But as Madison grew, the disorder continued to attack her immune systems, making her vulnerable to a host of serious illnesses. Just before New Year's in 2020, she was diagnosed with lymphoma, a form of cancer. She survived several months of chemotherapy but was weakened, and she contracted pneumonia last fall.

At her wake, Madison's body was laid in an open casket — dressed in the orange-and-black outfit that she wore while cheering for the Farmington High School Tigers. Pom-poms and her worn Bible were placed under her folded arms.

Besides her mother, Madison is survived by her sister, Paisley, 9; her father, Dan Meyer of New Prague; and her grandparents, Patricia and Roy Fenstermacher of Lake City, Minn., and Deb and Bruce Ellefson of Owatonna, Minn.