Remaining Time -10:28

Developmental milestones often bring joy, but for Tom and Megan Ramirez, they brought fear. Their daughter, Madi, born 10 weeks early, was still not walking at age 2. She dragged herself in an unusual crawl, and every instinct told her parents something was wrong. What began as concern soon became the start of a long, painful, and extraordinary journey.

At just 2 and a half, Madi was diagnosed with spinal muscular atrophy (SMA), a rare inherited disease affecting only 10,000 to 25,000 people in the United States. It weakens muscles continuously, a slow and devastating progression. Doctors compared it to ALS — but in children. They told her parents there was no cure. That she would likely die as a teenager. That she would never walk. That the little crawl she had mastered would fade. That her future would be confined to a wheelchair.

Megan remembers the devastation vividly. “Your mind goes dark. You picture everything your child will never do. And still, you have to walk into the next appointment and keep fighting.”

But Madi’s family did more than fight. They built hope with their own hands.

That summer, Tom built “Madi bars,” small parallel bars that stood in their living room. Every day, Madi practiced pulling herself up. Every day, she took small, shaky steps forward. And little by little, she made progress. By age 4, she walked short distances. By 5, she walked into kindergarten without a wheelchair.

Hope bloomed. Her parents dared to believe she might defy every prediction.

At University of Iowa Stead Family Children’s Hospital, Madi met a full team of specialists dedicated to her care — neurologists, pulmonologists, orthopedic experts, nutritionists. Along the way, she also received additional diagnoses: autism, ADHD, and neurogenic bladder. The list grew longer, but so did her determination.

For several years, her disease progressed slowly. But around fifth and sixth grade, everything changed.

Muscle atrophy set in sharply. At 11, she began having seizures — violent, terrifying grand mal seizures that struck almost daily. She fell from her wheelchair and lost her four front teeth. She lost the ability to feed herself, crawl, or walk. She grew frustrated, angry, unrecognizable even to herself.

“It was the worst time of her life,” Megan says. “She wasn’t just declining physically. She was slipping away from us.”

Hoping for answers, her care team ordered further testing. During a hospital stay, they finally uncovered the missing piece: a second rare condition called 15q duplication. It explained the seizures. It explained the developmental setbacks. It explained the sudden decline.

The discovery changed everything.

With this new diagnosis, her doctors pinpointed the right combination of medications. The seizures stopped — completely. Madi has now been seizure-free for more than two years. At the same time, she began receiving new medications to strengthen her muscles, the most advanced treatments available for spinal muscular atrophy.

Slowly, beautifully, Madi came back.

Her smile returned first. Then her laughter. Then her gentle, quirky personality — the one the disease had buried under years of fear and exhaustion.

In 2018, she underwent a grueling 12-hour spinal surgery to correct scoliosis. Afterward, her spinal injections for SMA became more difficult, but in 2020, she was approved for a newly released oral medication. Her strength has grown ever since.

“Madi became herself again,” Megan says. “Our bright, happy girl came back.”

Once her health stabilized, the family focused on something that seemed small but meant everything to Madi: her teeth. After she lost her four front teeth in the wheelchair accident, they were reinserted — but turned black and began to die. Madi scrubbed them in the mirror, asking why they wouldn’t come clean.

Her orthodontic team chose to remove the teeth entirely, then used braces to close the gap and move her incisors forward to become her new front teeth. A future surgery will help align her jaw.

Today, Madi has regained the ability to feed herself, though she is not expected to walk or stand again because of the degree of muscle atrophy. But that hasn’t stopped her from building a full, vibrant life.

Now 17, a high school senior, she loves math, plays the card game Uno like a pro, performs in school plays, cheers as a Sparkles cheerleader, works at a daycare center, and helps at her school’s coffee shop. She makes friends everywhere. She radiates joy. She proves every single day that ability is not defined by mobility.

Her parents, empowered by their journey, helped advocate for spinal muscular atrophy to be added to Iowa’s Newborn Screening Program — a change that now allows infants across the state to be diagnosed and treated early, long before the disease steals their strength.

Their advocacy means other families may never have to endure the years of uncertainty they faced.

“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. We have always felt safe bringing her back, again and again.”

Madi’s life is not measured in what she lost, but in what she continues to build — joy, purpose, resilience, and a future her earliest doctors said would never come.

She is living proof that with the right care, the right support, and the right love, even the rarest battles can lead to extraordinary lives.