Sasha Sumling wrote -
Zamya Sumling is 15 years old. She was diagnosed with Juvenile Dermatomyositis when she was just 8. JDM is a rare, life threatening, autoimmune disease that causes inflammation and swelling of the muscles and blood vessels under the skin, thereby bringing on muscle weakness and skin rashes. Children with JDM are sensitive to sun exposure. The sun burns their skin, causing inflammation, pain, and the first signs of active disease and flares. Therefore, JDMers have to be completely covered with sun screen and sun protective clothing. Juvenile Dermatomyositis also causes calcinosis, digestive tract complications, vasculitic ulcers and contractures. This rare disease changed Zamya's life dramatically; it was debilitating. Zamya went from being an energetic, spunky 8 year old to having a slow gait, being very fatigue, and being quiet; she didn't understand what was happening to her body. She eventually didn't have the energy to lift herself up out of her own bed. Her dad, Greg Sumling, would have to lift her while I, Sasha Sumling, dressed her. Eventually she couldn’t walk or climb the stairs. Greg would carry her up and down the stairs to her room countless times of each day when she didn’t have the energy to crawl them. Her JDM progressed rapidly. Her body began to fold over on itself, fixed. Each joint was locked in place. She couldn’t stand or walk upfront. After a trip to see the myositis specialists in Washington, D.C., and a collaboration with her rhuemotolgist here in Houston, TX, Zamya began a very intense medication regimen. She was given high doses of treatments, such as chemotherapy, steroids, antibodies, immunoglobin from plasma, and bisphosphonates twice a week. She did this for two years. On the eve of her 13th birthday, Zamya took her first steps outside her wheelchair after being wheelchair bound for 4 years. Though she was still suffering from having contractures, she was finally able to walk. Throughout the duration of her 7 year battle with JDM she has endured many complications from the disease and treatments which include, but are not limited to: osteoporosis, cataracts, arthritis, weight gain from steroids (which is hard for any preteen to deal with), and skin discoloration. She also has calcinosis throughout her body. Calcinosis are solid calcium deposits in soft tissue caused by trauma and is largely influenced by the severity of the disease. In Zamya's case, any stress or overuse of her muscles would cause calcinosis. Because she was unresponsive to treatments at the beginning, the disease took over her body. Zamya has had several surgeries and blood infections, all of which were followed by hospitaliazation, with one her longest stays lasting 23 days. At her sickest, she was unable to go to school. She missed 4 years of public school - grades 5-8. That is, for four years, she was isolated with no social interaction with her peers. Consequently, she lost all the friends she had in elementary school and suffered from depression. After missing her middle school years, Zamya was determined to attend high school like her peers and her brother and sister. With the help of her doctors and counselors, Zamya was able to attend school her freshman year. However, the stress of making friends and being accepted by others brought on great anxiety that year. She is now a sophomore, walking the high school campus and also participating in school clubs and organizations. Nevertheless, she still misses several days of school due to being sick often and having to get infusions and attend doctor appointments. Zamya has been seen by countless doctors here in the medical center. She was also treated at Shriner’s Hospital for 14 days with no end results and in Washington D.C. - all in the hopes to help cure her of JDM. SHE NEEDS A CURE. Please join us in the walk, “WALK STRONG FOR CUREJM,” donate to find a cure and help Zamya and other kids like her.