Tuesday, July 5, 2005
Photo by Abigail Wix
Lemonade, friends are perfect mix for finding
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
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.
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
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
"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
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.