Madi’s Story

Girl leaning against tree

Kindergarten is about making friends, learning how to count by two’s, and reading Biscuit books. But for Madi, Kindergarten was not so simple. In September 2018, she began struggling with muscle weakness, and her legs hurt. At first, her parents guessed it was just growing pains, and that’s common for kids.

But by the time October came around, the pain had gotten worse. They went to appointments with so many doctors to find out what was wrong. Despite all the labs run, they could not figure out what was happening in Madi’s body. It wasn’t until they chose to change doctors that the breakthrough began. Their new doctor’s pair of fresh eyes immediately knew something serious was wrong.

Madi was referred to Cook Children’s Hospital in Fort Worth, Texas. At this hospital, she met Dr. Guirola, who ran labs but also took a biopsy. He arrived at Madi’s diagnosis—juvenile dermatomyositis.

Madi was admitted to the hospital, where she would have to stay for the next week. And for the next year, she would have to be in physical and occupational therapy. But now, three years later, Madi has seen a lot of improvement. That’s not to say she doesn’t still have hard times—days of struggle do happen. But as of May 2022, her latest lab results brought good news. She’ll finally be able to get off methotrexate, a chemotherapy agent. Hope is hiding around corners of this busy maze, and we need only to believe it’s there.

Madi’s family loves being a part of the Cure JM Foundation. They know firsthand how important it is to help raise money to find a cure. And the advice to new JM families from Madi’s mom, Jennifer? Reach out to the JM Facebook pages. They’ve helped answer a lot of questions. No one is alone—not one patient and not one family. In the Cure JM community, we’re all united by a shared love for our children and a shared hope that one-day JM will be old news, never to disrupt kindergarten classrooms, play dates, or soccer practices.

Rare Disease Warriors

Since it is Rare Disease Month, we would like to take a moment and shine the spotlight on some of our amazing JM warriors.

Shop to Support Cure JM

We have compiled a list of Cure JM items you can purchase, as well as other products, that might help you and your child in their JM journey.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

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