Our little Miss Mollie experienced drastic decline in her physical activities between March and May of 2016. To the point where she couldn't even get out of bed without assistance. She moved like someone with arthritis. Her teachers told me that she cried when she was unable to join her schoolmates on the floor for story time. It just hurt her too much to bend down. She didn't have the strength to even sit up unassisted.
During her slow progression of physical decline we sought out medical help from foot doctors to pediatrician basic recommendations... but she continued to decline. Finally in June, her pediatrician agreed that "something is seriously wrong". Our pediatrician made an appointment at Phoenix Children's Hospital (CHP) for an MRI. We stayed in the hospital for 4 days trying to figure out what was causing her physical decline. Finally, a blessing… A diagnosis...
Mollie was diagnosed with Juvenile Dermatomyositis (JDM). "Approximately 2 to 4 children in a million in the United States are diagnosed with JM each year". It’s a rare autoimmune disease in which the body’s immune system attacks its own cells and tissues.
Approximately 1,000 new cases of JM are diagnosed in the US every year. This insidious disease can attack almost all systems of the body. For many children with JM, it’s a challenge to simply stand up or sit down. Extreme fatigue and weak painful muscles make walking difficult, while activities such as running or climbing upstairs can be all but impossible. With a diagnosis, comes disappointing news that there’s no cure but with advances in early diagnosis and aggressive treatment, the outcome has continued to improve.
Some children experience a mild form of the disease and may go into remission (this is what we hope/pray for Miss Mollie). Others follow a more severe and potentially debilitating course that can be life-long. About one third of JM patience will have some functional disability. Some will battle an array of serious complications, including the inability to walk, ongoing pain, disfigurement and even death. Whether the course of the disease is mild or severe, JM is life-changing for all of these children and their families. I know it has been for the Sanders family. We continue to battle her JDM with steroids and cancer treatments.
We’ve seen great improvement in the past 3 months. She’s back to playing on the floor and is swimming like a fish! We’re slowly backing off some of the treatments to see how her little body will respond. We’re all praying for her continued strength in battling this disease into remission. We are also aware that many families with JDM are doing the same. If you have a few extra dollars to spare, please give to the JM foundation to help find a cure! Many thanks for your prayers and thoughts on our journey…. God Bless.