Emelia Howe wrote -
Please help us make a difference in lives of kids like Eme and join us for the 2nd Annual Walk Strong to Cure JM at the University of Minnesota Campus on Saturday June 1st!
For the past year and half, our courageous Eme has been going through treatment for Juvenile Dermatomyositis, a rare autoimmune disease that can be life-threatening. She was diagnosed at age four. At the time she started treatment, she couldn't climb up the stairs, stand up from sitting, or run. The decline in her health seemed to happen so quickly, but after she was diagnosed, we realized the disease had been slowly taking away from her physical ability for months. I remember walking to the Wayzata Library over the summer, and my younger daughter Gabby who was two and a half at the time, had climbed the entire flight of stairs, while Eme was having difficulty and was barely half way up. In that moment I remember thinking that was odd. At the start of school that year we signed her up for soccer, but she refused to go out and run with other girls. We couldn't figure out why and she couldn't articulate what was happening to her.
Eme was on high dose steroids, prednisone, for one year. She started monthly infusions of steroids and IVIG about two and half months in, along with taking a weekly dose of methotrexate (a light dose of chemo). When she goes in for the infusions, she spends the entire day in the hospital. She received the courage award you see in the photo from the nurses after the amazing job she did while they put in her IV. She held still and calm. We are incredibly grateful for how well she has responded to the treatment. Eme is back doing gymnastics and dance, and her spirit is as lively as ever! We thank God every day for her progress, and for all of the support we have received from our family, our friends, and our school and church community. Thank you, thank you!
The main priority for CURE JM is getting better treatments for kids like Eme, and eventually a cure. We hope you will join us for the walk in June! Go Team Eme!
Walk Strong for CURE JM
Saturday, June 1st
University of Minnesota - Coffman Memorial Union
300 Washington Ave S.E. Minneapolis, MN 55455
Registration 9 a.m., Walk starts at 10 a.m.
East River Road Garage
385 E River Parkway, Minneapolis, MN 55455
Note: There is a $6.00 parking fee.
(All proceeds benefit Cure JM Foundation, a non-profit dedicated to finding a cure for Juvenile Myositis, a life-threatening disease which causes the body’s own immune system to attack healthy cells and tissues. It can affect virtually any system of the body, the heart, lungs, skin, muscles, and more. )