STATEHOUSE – State Representative Kathy Heuer (R-Columbia City) brought House Resolution 46 to the floor on Monday raising awareness for Juvenile Myositis, an autoimmune disease affecting nearly 17,000 children worldwide. Madeline Dean, Caroline and Katherine Alderfer, Marley Andrews and Joy Hedtke, all children with JM, and their families were in attendance at the Statehouse to hear the resolution alongside many other families whose lives have been touched by Juvenile Myositis.
Madeline traveled to the Statehouse Monday from Ft. Wayne with her mother, Angela and her aunt, Julie Llewellyn. Four other children with JM were recognized by the General Assembly today with their families along with Thuy Beam, a pediatric rheumatologist nurse from Ft. Wayne.
“Madeline has stood up to this life-altering disease, a challenge that many adults would have trouble overcoming,” said Rep. Heuer. “She is a courageous young lady. It was truly an honor to recognize her today, in addition to all the other children fighting this disease.”
Juvenile Myositis causes the body’s immune system to target and attack the muscles and skin. It results in fatigue, muscle weakness and skin rash. It is a life-altering disease that can range from minor annoyance to chronic pain, an inability to walk and bodily disfigurement.
The disease is diagnosed in approximately 1,000 children in the U.S. each year. It generally develops between the ages of 6 and 7, and is twice as likely to affect girls. Juvenile Myositis has no known cure, but symptoms can be treated with steroids, immunosuppressants, and chemotherapy. Treatment can have severe side effects.
“Having the opportunity to speak on the House floor about someone so brave was incredibly humbling,” said Rep. Heuer. “These children are tough, and I am inspired by their courage.”