Juvenile Dermatomyositis and Juvenile Polymyositis are the most common forms of JM (Juvenile Myositis), which is a rare autoimmune disease that affects approximately 17,000 children and adults, and nearly 1,000 new cases are diagnosed in the United States every year.
The Shevlin family, from Lake Stevens, has witnessed some of the debilitating symptoms in their six-year-old daughter Tessa, who was diagnosed with Juvenile Dermatomyositis just two years ago.
Some of the symptoms associated with this disease include muscle weakness and pain, severe fatigue, rashes, swallowing and digestive difficulties, lung and heart problems, vasculitic ulcers and calcinosis.
Some children can experience a remission, however others will battle JM their entire life. In some cases complications can prove fatal.
Currently, there is no known cure.
“Tessa has been undergoing treatment for the disease for almost two years and is still waiting for the disease to go into remission,” Julie Shevlin, Tessa’s mother said.
The Shevlin family has become actively involved in helping to find a cure for this devastating disease and are continuing to hold fundraisers to not only raise money but also to raise awareness.
“Recently, our family entered a contest called “Cartwheel for a Cause” through Verity Mom, a part of Verity Credit Union in Seattle,” Shevlin said. “Thirty-seven passionate Moms with worthy causes submitted short, 60 second videos about their cause with the requirement of a cartwheel within the video. Being a previous gymnast (for Seattle Pacific University) and having a cause (Cure JM) we are passionate about, made this contest the perfect match for us.”
The Shevlins were awarded $5,000 for Cure JM and an additional $1,000 for their family. They donated the $1,000 to Cure JM also.
“We attended the award ceremony where we were announced the winner,” she said.
Their passion for this cause doesn’t stop there.
On Saturday, June 18 the Shevlins are holding a ‘Cure JM’ Kids Marathon at Lundeen Park in Lake Stevens that will include children of all ages running as part of Team Tessa.
“This group consists of over 40 adults and over 20 children running and raising money for our daughter’s disease, Juvenile Dermatomyositis. The adults are running in the Seattle Rock ‘n Roll marathon on Saturday, June 25 and the kids are doing their own version of a marathon in which they have been tracking their running to complete a full 26 miles, finishing the final mile together with ‘Team Tessa’ on June 18,” Shevlin explained.
The event on June 18 will start at 11 a.m. at their home just down the street from Lundeen Park.
“The kids will run a one-mile route to and through the park with the final finish back at our house on Vernon Road,” Shevlin said.
While the kids are running, adults will be helping them along all while cheering them on to the finish line.
“Our daughter, Tessa, will be amongst the runners, ” Shevlin said.
They will also be holding other events throughout the summer to help raise funds for the Cure JM Foundation (www.curejm.org).
“This organization, founded and run by parents of children with JM, is the only foundation raising research money for this rare disease. 100 percent of the money to Cure JM goes to research for the disease,” Shevlin explained.
They will also be holding a Seattle Space Needle fundraiser on Tuesday, June 21.
Summer Solstice at the Needle includes a cocktail party, silent auction, and Cure JM awareness night out.
Tickets are $50 and include a trip to the top of the Space Needle.
Tickets can be purchased at: http://summersolsticecurejm.eventbrite.com/ or the Shevlin Family at firstname.lastname@example.org.
They are also looking for business sponsorship and silent auction items for this event.
An account has been set up for donations and sponsors. Contributions can be made to any Wells Fargo Bank in the account of Team Tessa.