Madison Ramirez being selected as a Kid Captain for Iowa football’s game against Wisconsin just made perfect sense.

Not only will the game be played in Madison, Wisconsin, but the Badgers are sponsored by her favorite restaurant — Culver’s. 

“She would eat Culver’s every day if she could,” Ramirez’s mother, Megan, said. 

Wisconsin Athletic Director Chris McIntosh gifted Ramirez’s family tickets to Saturday’s game at Camp Randall Stadium. The 17-year-old will watch the game in her Hawkeye jersey with a big gold bow in her hair.

The bow is a perfect accessory to Ramirez’s already bright and positive personality. 

“She’s so positive, and she always thinks she can do everything,” Megan said. “She never gets down and upset.”

Ramirez, from LeClaire, Iowa, was born about 10 weeks premature and stayed in the NICU for five weeks after that. Doctors told Megan and her husband, Tom, that their daughter’s development would be delayed until she was around 2 years old.

But when Ramirez turned 2 years old, Megan said her daughter hadn’t hit those developmental milestones and had a “really funny crawl.”

Doctors searched for other possible neurological problems, and Ramirez was diagnosed with cerebral palsy, which was later discovered to be a misdiagnosis as her family kept looking for answers.

When Ramirez was about 2-and-a-half years old, she went through genetic testing and was accurately diagnosed with spinal muscular atrophy (SMA), a genetic condition that weakens muscles and causes problems with movement. 

Megan was told there was no cure for SMA and that her daughter would probably be in a wheelchair her whole life.

Megan said the news was devastating to hear but knew her family had to make the best out of her daughter’s life. 

“Let’s just take her as she is, and, you know, let’s just let her lead the way, and do what we can do,” Megan said regarding when her family found out about Ramirez’s diagnosis. 

Ramirez started preschool at 3 and started walking a little bit, but it wasn’t until age 4 that she took her first independent steps.  Tom had built his daughter parallel bars like he saw gymnasts use in the Olympics, and it helped Ramirez hold herself up and learn to walk. 

When that happened, her SMA diagnosis was moved to type 3 instead of type 2.

Megan said when her daughter started kindergarten at 5, she didn’t use her wheelchair much and could walk around her whole classroom.

There was a hope that Ramirez would defy all odds, but toward the end of elementary school, she started regressing and getting weaker. 

When she was 11, Ramirez started having seizures “out of nowhere.”

Megan took her to the University of Iowa Stead Family Children’s Hospital emergency room because local doctors weren’t finding anything. Ramirez stayed in the hospital for a week while she went through genetic testing.

About four to six weeks later, the UI came back with another genetic diagnosis — Dup15q Syndrome.  This meant Ramirez’s 15th chromosome was duplicated and was the reason for her sudden seizures.

Megan said her daughter had three different types of seizures, including petit mal and grand mal, which she had nearly daily for two years. Grand mal seizures can cause a loss of consciousness and violent muscle contractions. Ramirez was put back in her wheelchair for safety reasons.

Megan described this as “the worst time of [Ramirez’s] life.” 

“She lost a lot of brain function,” Megan said. “At that time, she lost all of her mobility. She could no longer crawl because of her seizures. She would fall a lot. She couldn’t feed herself.”

During this time, the first treatment for SMA was released. Ramirez received a needle injection into her spine every four months. The medicine being injected tricked her DNA into producing more of what she was missing. 

Ramirez slowly gained some ability back to feed herself and wasn’t as tired anymore. 

In 2020, a second SMA treatment was released, this time an oral drug. Megan was hesitant to start Ramirez on the oral drug because the spinal injections had been helping but decided to try it out because of the anxiety the injections caused her daughter.

“She’s actually gotten even a little bit stronger,” Megan said of Ramirez since she started taking the oral medication. “So she still will probably never walk but is able to crawl across the room, is able to feed herself, and can maintain her day at school and things like that.”

Doctors at the UI  eventually found a concoction of medications that have kept Ramirez seizure-free for two-and-a-half years. Ramirez has a baby monitor in her room still, however, so Megan and Tom can hear their daughter if she were to start seizing again.

“I’m still scared every night when I put her to bed that that’s something that could happen,” Megan said of Ramirez seizing. 

Ramirez’s service dog, a chocolate lab named Nora, was a calming presence for the young girl when she would come down after seizing.

Nora also helps out Ramirez with daily tasks like untying shoes, taking socks off, turning the lights on, pressing elevator and door-opening buttons, and retrieving stuff off the floor. 

Ramirez finds happiness in reading, swimming, baking, and cheerleading for the Pleasant Valley Sparkles. Megan added that her daughter’s dry humor always makes her doctors and family laugh. 

Ramirez started cheerleading when she was 5 because Megan owned an all-star gym. Ramirez was also inspired by her older sister, Morgan, who was a competitive cheerleader. 

Another thing Ramirez loves is music. 

Ramirez is a big Taylor Swift and Morgan Wallen fan and always keeps her Airpods nearby to listen and sing along to her favorite songs. Every year, Ramirez chooses and performs a song at the St. Ambrose Dance Marathon event. Megan said they try and choose a “meaningful song” every year, like “Rainbow” by Kacey Musgraves. 

Her musical skills come from her father, who plays the drums in an AC/DC cover band named Electric Shock. Ramirez loves to watch her dad on stage and doesn’t shy away from rocking out during the concert.

“I recently took her to a show and this big, 350-pound, 6-foot-4 like Harley dude came over to me crying and told me how much it touched him to watch her rocking out and loving the music,” Megan said. 

Now, Ramirez visits the UI about three times a month for checkups with several doctors, including neurologists, pulmonologists, nutritionists, and orthopedic specialists.

“If it weren’t for these doctors, we would be mourning her instead of celebrating her,” Megan said of her daughter.

Kathy Matthews, a pediatric neurologist at the UI, said Ramirez is on treatment now for her SMA medication and was thrilled about her Kid Captain selection.

“The nicest thing is that we can talk about improvements rather than just talking about losing skills,” Matthews said. We talk about the, you know, activities and the things that she’s doing … So the Kid Captain thing is a very nice sports-related honor for her. I was so happy about that.”