LAKE STEVENS — Tessa Shevlin’s long, blond hair and blue skirt fly in the air as she takes a jump off the living room couch.
She lands with a happy laugh and starts chasing her 4-year-old brother Lochlan.
It looks like the normal day in the life of a 6-year-old, but Tessa couldn’t do
any of these things just six months ago.
She is being treated for juvenile dermatomyositis, a rare autoimmune disease that affects a child’s muscles and skin. Tessa’s parents, Julie and Justyn Shevlin, are on a mission to raise money and educate other families about the disease. They recently won $6,000 in a contest sponsored by the Verity Credit Union in Seattle. They were awarded $1,000 for themselves and $5,000 to go to Cure JM Foundation, which provides help for patients’ families and supports research into the disease.
The contest was called Cartwheel for a Cause, and participants had to submit a video featuring a cause they wanted to benefit and — you guessed it — a cartwheel. It was a piece of cake for Julie, who was a gymnast in college. The video features the family’s show of support for their cause.
The Shevlins were invited to the award ceremony in March as one of the three finalists. Being declared winners was a wonderful surprise.
“We didn’t think we’d win,” Julie said. “Hopefully, this will get researchers’ attention.”
Little is known about JM or how it affects kids as they grow up. The Shevlins went through numerous doctors before Tessa was diagnosed almost two years ago.
Friends and relatives have been helping the family through Tessa’s illness. About 40 of them are training for the Seattle Rock’n’Roll Marathon this summer as part of Team Tessa.
The adults also wanted to get the kids involved and created a “kids marathon,” a game where kids need to log their walking and running into a special chart. The goal is 26 miles, and Tessa is almost half-way through. The chart includes stickers to mark each completed mile and rewards along the way, such as watching a new movie and getting to decide dinner.
Before doctors at Seattle Children’s Hospital finally put a finger on Tessa’s strange skin rashes and inflamed joints, her parents thought their daughter was a shy and quiet child. She didn’t like to run around on the playground. She threw a fit sometimes when Julie asked her to go to her room. It later turned out that going up the stairs was painful.
The first few months of Tessa’s treatment involved a high dose of steroids. She went from 32 pounds to 50.
“She remembers her ‘puffy cheeks.’ ” Julie said. “She didn’t look in the mirror for six months.”
She was in pain, but doctors said they had to treat the disease aggressively. Tessa took it all in stride. She is better now and enjoying bike rides and walks to the parks — simple things she couldn’t do when she was younger.
“We are playing catch-up,” Justyn said. “But we look at it as a glass half-full.”
Help cure juvenile dermatomyositis
To learn more about the disease, go to www.curejm.com.
Read more about Tessa or contribute to Cure JM Foundation at bit.ly/TessaShevlin. Donations for the Team Tessa account are being accepted at any Wells Fargo Bank branch.
Watch Cartwheel for a Cause videos at www.veritymom.com/cartwheel-for-a-cause