When Maddie Dean’s autoimmune disease prevented her from going outdoors in peak sunlight beginning at age 3, her mother introduced her to art. Maddie liked giving her creations away, and as she grew older, realized that her paintings could raise dollars as well as spirits. From sales through her “Masterpieces by Maddie” page on Facebook, the 9-year-old recently made an $860 donation in support of the Child Life and Rheumatology programs at Riley Hospital for Children at Indiana University Health.
“Her disease has made her more compassionate for other sick children and people who are struggling,” her mother Angela says. “She has a beautiful heart.”
Maddie is treated at Riley Hospital for juvenile dermatomyositis, or JDM, an incurable disease in which the body’s immune system attacks its own cells. Angela and her husband Matthew noticed a rash on their daughter’s face in December 2011. With testing, their pediatrician in Fort Wayne confirmed JDM, which he had seen only once, 10 years before. Many doctors have never seen it at all, but the Deans' pediatrician had studied at Riley, where one of his IU School of Medicine rotations was in pediatric rheumatology.
Maddie was severely weakened when she first arrived at Riley, and she received large doses of steroids that caused severe side effects. The steroids have been reduced over time in Maddie’s regular visits to pediatric rheumatologist Susan Ballinger, M.D. The patient herself is involved in planning her own care: “Dr. Ballinger doesn’t just talk to my parents,” Maddie says. “She includes me in it.”
Treating rare diseases like JDM also requires a collaborative approach, Dr. Ballinger says. “We have been involved in CARRA (the Childhood Arthritis & Rheumatology Research Alliance) since its inception. Funded research is looking into treatments and outcomes, and we are part of that through registries and active participation in research trials.”
Watching Maddie grow and be able to pursue her interests has been especially gratifying for Dr. Ballinger. “She’s a natural leader and such a fun kid,” she says.
In addition to art, Maddie loves karate, reading and playing the piano. But lately, the homeschooled third-grader has spent most of her free time painting to raise money for Riley Hospital. “Sometimes it’s kind of hard,” she says of her visits to Riley. “But the nurses are really, really nice.
They’ve done so much for me, I want to give back so it will help other kids.”