Make-A-Wish grants Bemidji girl’s dream of play set

By Laurie Swenson Staff Writer

Michelle LaMoure was so excited, she couldn’t find her words.

When the astonished 6-year-old rural Bemidji girl received a gigantic play set from the Make-A-Wish Foundation of Minnesota Thursday night as part of a surprise party, she blurted out, “I’m so ashamed!”

The word she was looking for? “Excited.”

The play set was assembled in six hours by Rainbow Playsystems personnel who arrived minutes after Michelle’s father whisked her away for the day to visit her grandparents. Michelle’s wish had been for a play set with a yellow slide. Her setup features swings, a glider, a fort and two slides, both of which are yellow.

Michelle battles juvenile dermatomyositis, a rare autoimmune disease. In juvenile myositis, which includes juvenile dermatomyositis and juvenile polymyositis, the body’s immune system attacks its own cells and tissue.

Only about 5,000 children in the United States are currently diagnosed with JM. There is no known cure.

Children between 2½ and 18 years old at the time of referral who have a life-threatening medical condition are eligible to have a wish granted by Make-A-Wish.

“We’re all really excited about it,” LaChelle Semanko, director of program services at the Make-A-Wish Foundation of Minnesota, said Thursday afternoon in a telephone interview.

Researchers estimate a third of JM patients will be chronic and never go into remission, a third will have temporary remissions, and a final third will reach permanent remission. The primary medications used to treat symptoms of JM are immunosuppressants, corticosteroids and chemotherapy. The drugs can cause severe side effects, but they have greatly increased the odds for JM patients.

Michelle’s parents, Cyndi and Brian LaMoure, take part in an online support group (located at www.curejm.com), affiliated with the Cure JM Foundation, an all-volunteer foundation created and managed by families of children affected by JM.

“Without the support of those moms, we probably wouldn’t know much about juvenile myositis,” Cyndi said.

For some kids, JM is life-threatening. Two children in the support group have died recently: a 2-year-old from Massachusetts on May 27 and a 5-year-old from Fresno, Calif., on July 3. Both died of lung complications, Cyndi said. “The common cold can do these kids in.”

Only three Minnesota children are JM patients, one of whom Michelle met during a visit to the Twin Cities. The other lives in Austin, Minn., and goes to the Mayo Clinic.

Giving back

Representing the Make-A-Wish Foundation of Minnesota at the LaMoure home Thursday was Ashley Bateman, who will be a senior at Bethany Lutheran College in Mankato in the fall. Bateman, who has a double major in communication and sociology and a minor in health communications, is interning with Make-A-Wish. She is currently on a week’s vacation with her family in Nisswa.

“She’s made everything happen,” Cyndi said. “She’s done a wonderful job.”

Bateman had not met the LaMoures before Thursday, but had logged many hours on the telephone with them, including a 20-minute chat with Michelle.

Interning with Make-A-Wish is an experience rooted deep in Bateman’s past. She was only 4 when she and her family went on a Disney cruise, a Make-A-Wish gift for her older brother, Adam, then 11, diagnosed with NKI lymphoma. He was eventually cured of his cancer.

“I definitely want to give back,” Bateman said.

Paperwork was started in March for the Make-A-Wish referral, Cyndi said. Make-A-Wish volunteers met with Michelle while she was at the University of Minnesota Fairview Medical Center, Brian added.

The LaMoures said they want people to know that the symptoms of JM can mimic ordinary childhood ailments. With their daughter, their first clue was a pesky rash, along with some vague complaints of back muscle pain. Other possible symptoms are fatigue, malaise, muscle weakness, weight loss, joint pain and inflammation, difficulty swallowing, calcium deposits, mouth ulcers and fever.

“We didn’t want to be the parents who run to the doctor for every little thing,” Cyndi said.

They tried baby oil for the rash, which didn’t work. Neither did the erythromycin prescribed by a doctor. Three months later, after a visit to a dermatologist, Michelle was finally diagnosed, two days after her fifth birthday.

“Since then we’ve had blood draws, medications and appointments with a pediatric rheumatologist in the Twin Cities,” Cyndi said.

The steroids Michelle started taking caused her to double her weight, which landed her in a wheelchair. She has lost 20 pounds since then, looks like herself again, and is now running around like any other child. She hasn’t quite been able to give up the steroids, but her dosage has been decreased from 40 milligrams to 4 milligrams, Brian said.

After Michelle’s diagnosis, the LaMoures sold their house in Grand Marais and moved to Bemidji. They arrived here last August, and live in a house on the same land on which Cyndi’s parents, Tom and Wanda Evans, and grandmother, Virginia Halberg, live. All were on hand for Thursday’s surprise party, along with Michelle’s siblings, Danielle, almost 3, and Eric, 1-2/2; her godmother, Yvonne Turnus, who flew in from California; and many of her young classmates and their families.

“They watched Michelle go through a lot,” Cyndi said of the classmates.

Because of her condition, Michelle is very sensitive to ultraviolet rays in sunshine that can flare her rash. For Michelle, a sunburn can mean that her body’s immune system could turn on itself.

She can go outside until about 10 a.m., but after that she must stay indoors until about 6:30 p.m. at this stage of the summer. The family plans to put up a shade cloth designed to keep out the UV rays.

Classmate Katie Hart gave Michelle an extra gift Thursday: A sun tent, which will allow her a little extra time outdoors while waiting for the shade cloth.

Semanko said the state chapter grants about 200 wishes a year. She said the state organization is seeking more volunteers in this area. For more information, call Kristen Lenz, volunteer coordinator, at (763) 571-9474.

More information on Make-A-Wish is at www.makeawish.org.