Kirkland schoolgirl faces rare disease with courage

Redmond’s Molstad family recently flew to Southern California and visit LEGOLAND. The trip won’t be all fun and games, however.

They’ll participate in the Cure JM Foundation’s Carlsbad Marathon and Half Marathon and an educational seminar with experts on juvenile myositis.

Eleven-year-old Noelle Molstad was diagnosed with JM, a rare and potentially life-threatening autoimmune disease, in June 2008. She had just finished fourth grade at Holy Family School in Kirkland, when she developed a mysterious rash. She complained that her eyelids burned after a trip to a swimming pool, so her parents, Nancy and Steve, initially thought it might be a reaction to chlorine in the water.

Then Noelle’s sister Amanda, who is eight, noticed that Noelle had a rash on her knuckles, elbows and knees, too. Nancy guessed it might be eczema but a trip to the pediatrician took an alarming turn.

Noelle’s doctor said she had seen a child with similar symptoms during her hospital rounds and she ordered a blood test. That’s when Nancy really started to worry. “The next day, I heard, ‘Come to see a rheumatologist and pack a bag,’” she recalled.

Noelle was immediately put on a high dose of the steroid Prednisone and began receiving injections in the hope of putting the disease into remission. The disease attacks and weakens the muscles. Meanwhile, side effects of the Prednisone include weight gain, bloating and loss of bone density. Noelle has gained 30 pounds since June and feels self-conscious about her appearance.

“(The illness) makes me slow down because of the weight gain. In PE, I used to be a great skipper, but now it’s more like marching because my legs are heavier,” Noelle said.

She used to enjoy soccer and cross-country, but has had to give up those activities. She still plays a bit of basketball, twirls baton and goes to Girl Scout meetings.

“Classmates understand, but I feel different because I look so different,” she added.

Her mom said Noelle has become more reserved at school, less likely to raise her hand, because she doesn’t want people to stare at her.

The Cure JM events in California officially took place Jan. 23-25. Around 30 other families affected by JM were there, too. One teenage boy who has JM is starting a band and trying to get an appearance on a Disney Channel show.

Noelle and Amanda took part in a short children’s run at LEGOLAND and Nancy and Steve met guest speaker Dr. Lauren Pachman, a specialist from Chicago, who is one of the authors of a book called “Myositis and You.”

A frustrating factor is that JM “is so rare, there is very little known about it,” Nancy said. “Autoimmune disease is genetically predisposed, but they don’t know what triggers it. Some who have it, go into remission and it never comes back. For others, it comes and goes. Sun is the worst thing. Even if it goes into remission, they must always avoid the sun.”

Nancy has created a Web site to raise awareness for JM research. Visit www.firstgiving.com/babyangel.

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