When Abby was just two years old, her family noticed rashes appearing on her face and hands—an early warning sign of something more serious. Not long after, a tick bite led to a high fever and an emergency hospital stay where she was treated for suspected Rocky Mountain spotted fever. During that time, a vigilant pediatric oncologist, brought in to rule out leukemia, recognized the rashes as a possible sign of juvenile dermatomyositis (JDM), a rare and serious autoimmune disease. That moment changed Abby’s life.
Thanks to the early suspicion and referral to a rheumatologist, Abby was diagnosed with JDM quickly. Some families aren't as fortunate—many experience delays in diagnosis because JDM is rare and often mistaken for something else if the clinician isn’t familiar with it. That early diagnosis gave Abby a head start in managing her condition and accessing the care she needed.
She began treatment right away, starting with steroids and methotrexate, and later adding IVIG (intravenous immunoglobulin), a therapy that helps regulate the immune system. Abby’s case has always involved mild muscle weakness, but her treatment journey hasn’t been easy. Each time doctors have tried to wean her off IVIG, her symptoms flare, requiring her to restart medications and adjust her care plan. Most recently, after a hopeful taper last fall, signs of a flare have brought her back to more intensive treatment.
Despite the ups and downs, Abby is a joyful, resilient kid. While she doesn't have the stamina for sports, she thrives in her own way. She loves reading and lights up on stage during her acting classes, where she gets to express herself in new and creative ways.
Abby will be sharing her story at this year’s Walk Strong to Cure JM event in Reno on Sunday, April 27, from 9:00 AM – 12:00 PM, at Sparks Marina Park, helping raise crucial dollars and hope for kids living with juvenile myositis. Her voice represents the strength and spirit of many children who are facing a difficult diagnosis with courage and determination.
Support is more urgent than ever. Recent federal budget cuts have eliminated key NIH research positions, putting lifesaving JM research and promising clinical trials, like a new steroid-sparing treatment, at serious risk. Without urgent funding, progress will stall. By participating in Cure JM events and fundraising efforts, the Reno community can help close the gap, accelerate treatment breakthroughs, and bring lasting hope to kids like Abby.
Come walk alongside Abby and other Reno-area families in support of children battling juvenile myositis. Your participation shows these brave children that their community stands with them! Every step brings us closer to better treatments and one day, a cure.
Enjoy a morning of connection and fun with doctors and researchers from Renown Children’s Hospital, along with coffee, snacks, raffle, and activities for the whole family.