In January of 2020, Marlowe’s parents were giving her a bath. She was only three years old at the time. They were alarmed, however, by the overwhelming amount of hair falling from their daughter’s head. They quickly took her to the pediatrician, only to be told it was a fungal infection. They were referred from office to office looking for solutions. For a year and a half, doctors were stumped by Marlowe’s symptoms. She not only suffered from hair loss, but also from a rash on her face and swollen red knuckles and cuticles.
It wasn’t until a dermatologist finally gave them a lead. They knew of JM, and soon Marlowe was referred to the rheumatology department at the nearby children’s hospital. At the hospital, doctors ran tests and did a biopsy on her thigh muscle to confirm the diagnosis: juvenile dermatomyositis. In August of 2021, Marlowe’s treatment started. Since then, she’s been on various high dose steroids, methotrexate, and monthly IVIG infusions. Despite being only five years old, she’s a tough cookie.
A harrowing moment came for Jessica, Marlowe’s mom, when they were leaving the hospital one day after an MRI. Marlowe was handed a brand new tea set. It was set in colorful plastic, an exciting gift to behold. But what was shocking for Jessica to realize was that those were the toys collected by hospitals and community organizations as donations to sick children. She never thought her daughter would be one of the children to receive one of those gifts. Jessica expected a sticker, but Marlowe’s health was more serious. It’s hard to realize that although available treatments can be incredibly effective, Marlowe’s situation was more than a sticker. It’s more than a tea set too.
Once treatment was underway, it wasn’t long before Jessica was scouring the internet for more information about her daughter’s condition. What is JM? Why is there no cure? Is their family alone in having to endure this? That’s when she found exactly what their family needed. Sitting in a sweet corner of Google, waiting patiently to be discovered, was Cure JM.
Jessica started off her involvement by attending town halls. Then the Giving Tuesday fundraiser came around, and she decided to participate. She posted on social media a description of her daughter’s condition, the current limited treatments available, and what Cure JM was doing to bring progress. Sure enough, they raised over $6,000 in about a week. Contributions came from friends, family, acquaintances, and even a former student of Jessica’s who is now a professional baseball player. In light of the happy whirlwind, Jessica was recently invited to join the Giving Tuesday committee so she can equip other families to direct their social circles toward Cure JM’s powerful mission.
But Jessica doesn’t only give back to Cure JM. The organization’s family has been pouring into her and her family too. She’s found hope especially in the Facebook groups for moms, parents, and caregivers. Seeing the stories of other families and knowing remission is possible is inspiring. Jessica’s family has had an endlessly frustrating relationship with their health insurance company, and these groups have provided a forum to ask for advice from others on the practical side of things. If there’s anything true about health insurance companies, it’s that they have a capacity to cause incredible headaches. And if there’s anything true about IVIG, it’s that it’s not cheap—at all. These places of connection make the daunting a little more doable.
Jessica has also been connected personally with other Cure JM moms across the country with children of the same age as their family. Jessica talks with them regularly. To have close allies in the same exact situation as their family has provided a place for encouragement and wisdom to be shared, and its even been inspiring for her daughter to know that she has fellow heroes who can truly empathise with her.
Marlowe has also been inspired by another Cure JM mom’s tangible and creative efforts. One mom published a children’s book about JM and what it’s like to receive an IVIG infusion. The book gave Marlowe a place to see herself in art and understand her own trials externally. In the Spring of Marlowe’s kindergarten year, Jessica went with her daughter to read the book to her class. Marlowe was able to point to a version of herself in those illustrations. She was able to take pride in her journey despite its constant frustrations. Although Marlowe does not enjoy her JM struggles in the slightest, Jessica and her husband have fostered within their daughter a sense that her health makes her special and unique. Unique is beautiful, and Marlowe is discovering how to see the good despite the bad.
Jessica is grateful for the support given to their family. She suspects they’d all be in a lonely and dark place without it. As stressful as it is, provided information allowed her to feel comfortable. Even though second-guessing and worry is a familiar threat, Jessica knows their family is set up for success. With the knowledge available to her largely from Cure JM experts and families, she feels empowered. She can take action for her daughter. She can raise money because she knows what it can do. She may not be able to magically erase the harsh reality of needles and tests and pills, but she can still help her daughter’s future and the future of patients who come after.
Given the opportunity to pass along her own wisdom to new Cure JM families, Jessica assures that it’s okay to feel scared. It’s an overwhelming process, and parents should give themselves grace and remember that they’re doing the best they can. She offers a simple observation: if you are upset and stressed, it means you’re a good mom. She doesn’t mean to say a sense of calm is a symptom of an apathetic mother. She’s only saying that if your heart is aching, it’s because you care about your child. There is no shame in that, nor is there a pain like it. It’s not easy to remember, however. Especially at the beginning, Jessica struggled to rationalize her feelings of gratitude and guilt in seeing her daughter’s case alongside fellow pediatric patients struggling with severe cases, cancer, or terminal illness. But a nurse reminded her one day that it’s not about the distribution of illness. The journey is relative to each family, and they should recognize the seriousness of the fact that Marlowe’s JM will never be a thing of the past, but she’ll always have to fight it off.
Today, Marlowe is in the 4th grade and continues to grow in strength, resilience, and confidence. With every season, she and her family face new challenges and celebrate new victories. Jessica remains hopeful as she watches her daughter navigate this journey with a brave heart and a bright spirit. Their family is lifted by the care of those around them and the support of the Cure JM community, which continues to walk alongside them, shining light into even the hardest moments.
