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.

Parrish’s Story

We would like to introduce a one-of-a-kind, competitive, and determined young man, named Parrish. His story of resiliency and hope is one that will resonate with many of us in the Cure JM family. Parrish faced many challenges in his journey with JM, but found hope and support in his family and the Cure JM community. We are pleased to now share his experience to help others facing the same struggles during Myositis Awareness Month.

Balancing Work and Caregiving: Strategies for Working Parents of Children with Juvenile Myositis

Balancing the demands of a career with the responsibilities of caregiving is a challenging task for any parent. For those with a child diagnosed with juvenile myositis (JM), a rare autoimmune disease affecting children, the challenge is heightened. Juggling work commitments while providing the necessary care and support for a child with JM can be taxing. In this article, we hope to provide you with a few effective strategies and insights to help working parents navigate this delicate balance.

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