Our journey with juvenile dermatomyositis began in the fall of 2017. Eme's preschool teacher, Mrs. Esterberg noticed a rash on Eme's knuckles. When she pointed it out, we realized we had noticed it before too, although it seemed to come and go. We took Eme into the doctor, and she referred us to a dermatologist immediately. With her sense of urgency, Brandon and I came home and scoured the internet and came across juvenile dermatomyositis. We started connecting the dots. She was tired a lot. She asked us to carry her up the stairs. She didn't like to run. Our girl who loved to dance all of the sudden didn't want to go to her dance class and had stopped dancing at home with her sister Gabby. I remembered a time over the summer when we were walking up the steps at the Wayzata library, Gabby, who was two at the time, was all the way up the steps, while Eme was struggling to get half way. At the time I figured she was tired. But it bothered me because it didn't make sense. Looking back there were a lot of subtle changes in her physical ability over time.
When Eme saw the dermatologist, she confirmed our suspicions and referred Eme to the experts at the University of Minnesota for treatment for JDM. We would have to wait 12 days to get in to the U, which felt like an eternity. Eme appeared to be getting worse by the day. She was weak. She couldn't get up off the floor on her own, and was falling more regularly. We were devastated and incredibly scared at the rapid decline in her physical ability.
At the U, we got our first glimpse of what was in store for our family. Our sweet Eme was a super champ, as she had to sit still for blood draws, an EKG, X-rays, an MRI, to name a few of the tests. Dr. Bullock put Eme on prednisone (steroids) and methotrexate (a light dose of chemo) along with other supplements and medicine to protect her stomach from the strong medications. At first she responded well, but in December it was clear she would need something stronger. The day after Christmas Eme went in for her first infusion of steroids and immuno globulin (IVIG) that takes about 8 hours.
"I just want to feel like a normal kid again." Eme said that to us repeatedly during the first few weeks of treatment. It was crushing to hear her say those words.
Eme is five months into treatment. She has made incredible strides and we thank her doctors and the good Lord for it! She has joy back in her eyes and her spirit is light and energetic! She is back dancing, walking up the stairs, running, and even wrestling Gabby! She recently showed us how she can touch her toes to the back of her head, she is making progress!
We are so grateful for the support, and the prayers we have received from our family, friends, and our church, and school. Thank you, thank you!