The newest University of Iowa Hawkeyes Kid Captain is Madi Ramirez of LeClaire, for this Saturday’s home football game against Wisconsin.
After she wasn’t walking by age 2, Madi was diagnosed with spinal muscular atrophy (SMA), a rare inherited disease that causes muscles to increasingly weaken. Her parents were told there was no cure but found hope with treatment plans from neurologists at University of Iowa Stead Family Children’s Hospital.
Madi began visits to a nutritionist, orthopedic specialists, and pulmonologists at the hospital, where she also was diagnosed with autism, ADHD, and neurogenic bladder, which causes frequent urination.
Only 1 in every 6,000 to 10,000 people are born with SMA, and a total of 10,000 to 25,000 children and adults are affected by the disorder in the U.S., according to the SMA Foundation.
Around age 11, Madi began having seizures and was diagnosed with 15q duplication, a rare genetic condition. That means her 15th chromosome was duplicated, causing epilepsy.
That condition is characterized by hypotonia and motor delays, intellectual disability, autism spectrum disorder, and epilepsy including infantile spasms, according to the National Library of Medicine.
Doctors worked to find a drug combination that has kept Madi seizure-free for more than two years, and ensured she had access to new drugs that improve muscle strength. In 2018, she underwent spinal surgery for scoliosis and will undergo jaw surgery in the future.
Now 17, and a Pleasant Valley High School senior, Madi likes math and performing in plays, is a Sparkles cheerleader and works at a daycare center and school coffee shop.
In its 14th year, Kid Captain is a partnership between UI Stead Family Children’s Hospital and the Iowa Hawkeyes to honor pediatric patients and celebrate their inspirational stories. For more information, visit the program website HERE.
