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Tuesday, July 5, 2005

Photo by Abigail Wix

Lemonade, friends are perfect mix for finding Gracie’s cure

By Abigail Wix
Tomahawk Leader Reporter

Ten-year-old Grace "Gracie" Mickelson of Tomahawk ran alongside her dad, Nathan, in yesterday's Pow Wow Days' Fourth of July 5K Fun Run. Watching her sprint, few onlookers would guess that five years ago, little Gracie couldn't even walk with her big sisters to go trick-or-treating.

"At first. I couldn't get in and out of bed or up and down stairs. But I'm getting better with medicine, and I feel really good now," Gracie observed during a lemonade and cookie sale at her house, where her sisters and friends helped her to raise money to help find a cure for Juvenile Dermatomyositis (JM), the disease Gracie is dealing with.

Learning about JM

JM is a rare autoimmune disorder in which the body's immune system attacks its own tissue and cells.

JM results in inflammation of the blood vessels and muscles, causing a rash and weakening of the muscles. Once the cells turn on their infection-fighting process. they cannot turn off, therefore damaging the body instead of protecting it. It occurs in only about 5,000 chi1dren in the United States, according to the Cure JM Foundation web site.

The muscles that are most often affected are the stomach, quadriceps. neck and biceps. Sometimes, inflammation occurs in the esophagus or in the gastrointestinal tract. Rashes occur on the eyelids and cheeks or knuckles, elbows and knees, the web site explained.

            Children with JM become fatigued, suffer from weak muscles and fever, the Cure JM Foundation reported. For some children, JM is life-threatening.

            Jill, Gracie's mother. said her daughter is fortunate to have been diagnosed early.

            At the age of 5, Gracie Wa5 breaking out in skin rashes along her elbows and knees.

“She was becoming weak, exhausted and losing flexibility “Jill observed. ”One day, she was sitting on the floor watching TV and then crawled away to get into a chair. She couldn't stand up. We took her to the emergency room.”

A Merrill doctor diagnosed Gracie with JM, and the next day, sent her to Marshfield Clinic to visit a rheumatologist, a doctor qualified in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. The following morning, Gracie was on her way to see a pediatric rheumatologist in Milwaukee –one of only two locations where such doctors practice, said Jill.

Gracie’s muscle enzymes, which leak from inflamed or damaged muscles into the bloodstream, were measured. Her antinuclear antibodies also were calculated to see how. her body was producing antibodies against its own cells.

The next step was two MRI scans, which detect muscle damage and inflammation.

“That was hard. I had to sit still for a really long time," Gracie recalled.

Gracie began medication treatment with Prednizone, an anti-inflammatory drug with side effects of increased appetite, slow growth, cataracts, mood swings and weight gain. She also had two, seven hour treatments of immunoglobulin to assist in strengthening Gracie's immune system.

As time went by, Gracie said she started to feel better. On HalIoween a couple of years ago, she joined her sisters trick-of-treating being pushed in a stroller, she said.

However, tbe 10-year-old girl had a bad reaction to medication at one point, but after it was readjusted, she's doing much better, said Jill.

"She's still on medication, but she’s not in remission yet,” Jill noted.

Gracie takes simple- but important- precautions every day to reduce impacts that could worsen JM. She wears clothing that protects her fair skin from UV sunrays, dons sunglasses and pink visors over her blonde hair. When she goes swimming, Gracie wears a full body suit. She also needs to stay indoors between 10 a.m. and 4 p.m.

''The sun can worsen her condition," JiII explained.

When Gracie was first diagnosed, her body was suffering from inflammation and it was important she rest, Jill said. But now that she's feeling stronger, Gracie can partake in all the things site loves to do, like

running, softball, dance and playing piano.

"It's good for her to stay active," Jill said with a smile.

Lemonade for a cure

Gracie. along with her sisters, Cassidy, 13, and Taylor, 15, partnered

with their friends, Alexa Ernst, 11, and Courtney Ernst, 13, to host a lemonade, cookie and blue JM-awareness bracelet sale during Jill's rummage sale last week. Friends, Billie and Hannah Meyer, also helped the girls make

special shiny pens to sell.

"She's my sister. It would be good to have a cure so she wouldn't have to worry about it anymore,” Cassidy said of raising money for Cure JM.

The lemonade stand brought in more than $50 within the first two hours of operation and a total of $330 was raised.

"If I had a disease, I would want people to help me," Alexa observed.

For Gracie, long-term prospects are unclear. Many children go into remission and are able to quit medication.

In the meantime, Gracie and her friends are happy to spend a bright afternoon selling lemonade to help find a cure for children dealing with JM.

Gracie will be a fifth grader this fall at 'Tomahawk Elementary School.