When most parents look for developmental milestones, they celebrate every wobbling step or babbled word. But for Tom and Megan Ramirez, each missed milestone felt like a warning. Their daughter, Madi, born ten weeks premature, had yet to walk by age two. She pulled herself along the floor in an unusual crawl, and a quiet fear began to grow in their hearts. Something wasn’t right—and they knew it.

What began as a parent’s concern soon became the start of a life-altering journey.

A Devastating Diagnosis

At two and a half years old, Madi received the diagnosis that would reshape her world: spinal muscular atrophy (SMA). A rare genetic disease affecting only 10,000–25,000 people in the U.S., SMA progressively weakens muscles and steals mobility over time. Doctors compared it to ALS in children.

The Ramirezes were told that Madi would likely never walk, would require a wheelchair, and might not survive into her teenage years.

Megan still remembers the moment clearly.
“You picture everything your child will never get to do,” she said. “But somehow, you still have to get up the next day and keep fighting.”

And fight they did.

The First Sparks of Hope

Instead of surrendering to the grim prognosis, Tom and Megan built hope with their own hands. That summer, Tom crafted small parallel bars—nicknamed the ‘Madi bars’—and set them in the living room.

Every day, Madi pulled herself up, her hands shaking, her tiny legs straining. But she didn’t stop.

Step by step—some days measured in inches—she made progress.

By four, she could walk short distances.
By five, she walked into kindergarten without a wheelchair.

It was a milestone her parents once thought impossible.

More Answers, More Challenges

At University of Iowa Stead Family Children’s Hospital, a full team of specialists joined Madi’s fight—neurologists, orthopedic surgeons, pulmonologists, nutritionists. Along the way, she received additional diagnoses: autism, ADHD, and neurogenic bladder.

The challenges multiplied, yet her determination never wavered.

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

Madi’s muscle atrophy accelerated sharply. She began suffering violent grand mal seizures daily. She fell from her wheelchair, losing her four front teeth. Even worse, she slowly lost the ability to feed herself, crawl, or walk. The vibrant girl her parents knew felt like she was fading away.

“It was the worst time of her life,” Megan says. “We were losing pieces of our daughter.”

A Second Rare Diagnosis — and a Turning Point

Desperate for answers, her care team ordered new tests during a hospital stay. That’s when they discovered another rare condition: 15q duplication syndrome.

This new diagnosis finally explained her seizures, cognitive changes, and the sudden decline that had stolen so much from her.

With this knowledge, her doctors were able to identify the right combination of medications.

The transformation was profound:
Madi’s seizures stopped completely.
For the first time in years, she was seizure-free—and has remained so for over two years.

Slowly, beautifully, the spark returned. She began laughing again. Smiling again. Becoming herself again.

Surgeries, Setbacks, and an Unshakeable Spirit

In 2018, Madi underwent a grueling twelve-hour spinal surgery to correct scoliosis. Recovery was painful and long, but she endured it with quiet strength.

In 2020, she gained access to a newly approved oral medication for SMA. With it, her physical strength began to improve. Her independence began returning.

“Madi became herself again,” Megan says with a smile.

Her parents then turned toward a different kind of healing—restoring her confidence. After the accident that caused her to lose four front teeth, Madi grew self-conscious. Her orthodontic team removed the damaged teeth, closed the gaps with braces, and guided her new incisors into place.

It wasn’t just dental work—it was reclaiming a piece of her identity.

A Life Full of Color and Joy

Today, at seventeen, Madi is a vibrant high school senior with a personality that lights up every room she enters. Although she cannot walk or stand due to advanced muscle atrophy, she has built a rich and joyful life.

She loves math.
Plays Uno like a champion.
Acts in school performances.
Cheers proudly as a Sparkles cheerleader.
Works at a daycare center.
And helps at her school’s coffee shop.

Her classmates adore her. Her teachers are inspired by her. And the people who meet her rarely forget her.

A Family That Fought for More Than Their Own Child

The Ramirezes didn’t stop at caring for Madi—they fought for other families too. They became advocates for adding SMA to Iowa’s Newborn Screening Program, helping ensure early diagnosis and treatment for countless future children.

Their efforts changed state policy and changed lives.

“We are incredibly blessed,” Megan says. “Madi’s teams have always put her first. We’ve always felt safe bringing her back.”

A Legacy of Love, Strength, and Hope

Madi’s life is not defined by what she has lost, but by everything she continues to build. She is resilient. Joyful. Determined. A living testament to what happens when love and perseverance meet extraordinary medical care.

Her story teaches us that:

• Ability is not defined by mobility.

• Progress is possible even against rare diseases.

• Family and hope can turn impossible into possible.

From the two-year-old dragging herself across the floor to the seventeen-year-old who radiates joy wherever she goes, Madi continues to inspire everyone who meets her.

She proves that courage is not always loud—it’s often slow, steady, and unshakeably hopeful.

And her journey is far from over.

Because Madi Ramirez is more than a survivor.
She is a beacon.
A reminder that miracles are built day by day, step by step, hope by hope.

And her story will continue to shine for generations to come.