Cadence was only 18 months old when she was diagnosed with juvenile dermatomyositis.
Her mother took her to their pediatrician’s office multiple times, only for covering nurses to misdiagnose her symptoms. “I knew something more was going on—I just did not know what,” says Stephanie, Cadence’s mom.
Stephanie described Cadence’s symptoms to a physician co-worker, who questioned what the pediatrician had said, and he suggested taking Cadence to Boston Children’s emergency room. Hospital clinicians confirmed Cadence’s diagnosis the following morning.
The hospital staff provided Cadence and her family with information on JM—the symptoms, her results, medications, and triggers—and started Cadence on medication.
“It was two steps forward and then a million steps back for the better part of that year,” Stephanie recalls. “But once her treatments were calibrated to prevent side effects, hope became more visible.
“It has been seven years since the worst day of my life, and I can honestly say I no longer think about JDM every day. Cadence is currently off all meds, and we see her team at BCH every six months for a check-up and lab draws. We still take germ and sun precautions, but other than that, Cadence lives the life of a healthy, strong, happy 9-year-old.”
The road was long and tiresome, but Cadence’s health is finally her own all these years later.
Along the way, talking with other moms in the JM community gave Stephanie hope. To see other children further along and in remission was encouraging and inspiring. She knew she wasn’t alone. “I felt these moms were the ones who could 100% completely understand what we were experiencing.”
Stephanie currently serves as the President of the New England Chapter of Cure JM
and as the local contact for families new to JM. However, that hasn’t stopped Stephanie from reaching out to other moms in the JDM Facebook support groups across the country. The Boston Children’s Hospital even has her contact information in their Cure JM materials!
“When I finally came to terms that I could not take this disease away from Cadence, I swore to myself that I would do whatever I could to help raise money for research and awareness.”
Stephanie’s efforts are aimed at the goal of better treatments, better care, and a cure. To Stephanie, creating awareness and educating physicians about the signs of JM are the most important things parents can do to help their kids.
While we work together toward our goal of raising money for research, Stephanie has some advice for families new to JM,”go with your gut. No one knows your child better than you, and you need to be their advocate. Find doctors educated on JM who you can trust. Find one or two JM families or caregivers to connect with and stay in touch with them.
Stephanie is sharing her daughter’s journey because it is one of hope.
“Hope is there. Look for it in the stories of those who’ve been through it and come out the other side.”
