Meet Kid Captain Madi Ramirez
Making progress, becoming advocates
“Madi’s smile returned, and we could focus on things like her teeth,” Megan says, noting that Madi’s four teeth that had been reinserted were dying and black. “This sweet, now teenager, would look in the mirror and scrub her teeth and would ask why they wouldn’t come clean.”
The orthodontic team decided her teeth needed to come out and they would use braces to close the gap and make her incisors her front teeth. She will have surgery in the future to move her jaw forward.
Madi has regained her ability to feed herself but experts do not expect her to be able to stand or to walk again due to how her muscles atrophied.
Now 17 and a high school senior, the LeClaire girl likes math and playing the card game Uno, performs in plays, is a Sparkles cheerleader, and works at a day care center as well as her school’s coffee shop.
Madi returns for regular appointments at the hospital and her parents advocated to have spinal muscular atrophy added to the Iowa Newborn Screening Program, so infants can now be diagnosed and treated early for the disease.
“We are so lucky and so blessed to have the best research and children’s hospital in the nation,” Megan says. “Madi’s teams of doctors have always put her first and care about her. The team approach has always been something that makes us feel so safe and secure bringing our daughter back time and time again.”