Kid Captain: Madi Ramirez

IOWA CITY, Iowa — Developmental milestones can be a cause for celebration when they are reached, or concern when they are not. Tom and Megan Ramirez were feeling the latter when their daughter, Madi, still wasn’t walking when she was 2.

“Madi was born about 10 weeks early at a local hospital and we knew she had some catching up to do,” says Megan. “By the time she was 2, she had a really funny crawl and she wasn’t walking yet, so we knew something else was wrong.”

Madi was diagnosed at age 2 and a half with spinal muscular atrophy, a rare inherited disease that causes muscles to increasingly weaken. Just 10,000 to 25,000 children and adults are living with the rare disease in the United States. Told there was no cure, her parents found hope with neurologists at University of Iowa Stead Family Children’s Hospital.

“It’s kind of like ALS, but in children. It’s a very progressive disease and her muscles would just weaken over time. We were devastated,” Megan says. “At the time, they told us she would probably die as a teenager, that she would never walk, that she would lose the crawl that she had, and she would be in a wheelchair all of her life.”

Read Madi’s story here.