April 16, 2007
A brave and strong little girl
By Kristen Miller
Although juvenile myositis is a rare and debilitating autoimmune disease, 7-year-old Maddie Schut is in remission and playing like she’s never played before.
After reading the April 2 Enterprise Dispatch article about 17-year-old Ben Fiecke of Waverly, Jill Schut found he and her daughter had something in common; dermatomyositis or juvenile myositis (JM).
JM is a disease causing weak muscles and oftentimes, a skin rash. Most of the time, the disease goes unseen by others.
Researchers believe there is a genetic predisposition to the disease and a cure is still unknown. JM affects approximately 5,000 children in the US, mostly girls.
The Schuts are not sure when Maddie first acquired the disease, but they knew something was wrong when she wouldn’t sit on the floor at daycare. Instead, Maddie would sit in a chair.
“We didn’t think much of it. We just thought she was a ‘thinking kid’ instead of a ‘playing kid,’” said her mother, Jill.
Later, they found out it was because her muscles did not allow her the strength to get up from the floor.
They looked into it further when Maddie had a bump on her elbow. After a biopsy, they found out it was benign. Later, they would find it was a calcium deposit due to Calcinosis, one of the less common symptoms of JM.
After that, Maddie complained that her hips and hands hurt. This was due to arthritis, a related condition with autoimmune diseases.
Just after she turned 3 years old, Maddie was diagnosed with JM. Diagnosis usually takes up to a year, but Maddie’s doctor, Dr. Soheil Chegini, had worked with the disease previously, was aware of Maddie’s symptoms and therefore, diagnosed her within three months.
After five years of routine visits to her rheumatologist at Gillette Children’s Hospital in St. Paul and many shots, or “pokes,” as Maddie called them, she is now in remission.
“She’s so brave,” her mother said.
Maddie even stopped taking her medication in October, although she still needs to be careful and wear sunscreen. The heat from the sun is said to be a trigger for JM.
Now, Maddie is able to do things she wasn’t able to do before like ride a bike and jump rope.
Cokato Elementary has been very supportive and helpful with Maddie, according to Jill, who appreciates the school’s efforts.
For the past two years, pop tops have been collected at the elementary school and given to The Cure JM Foundation. More than $200 was raised from the recycling of the pop tops.
“I don’t know how many times I emptied that bin last year,” Jill said.
Maddie has also helped her classmates and teachers to understand the disease better.
Last year, when Maddie was in first grade, she gave a speech over the intercom for the students, explaining what the disease was and why she was unable to do the same thing other kids could do.
This year, in Maddie’s second grade class, she gave another presentation. This time, she handed out Cure JM bracelets to her classmates.
‘The school is very open to learning about it (JM) and making Maddie feel the same as the other kids,” Jill said.
Jo Bender, Maddie’s school nurse, has tried hard to make Maddie feel like any other kid.
“She’s really tried to make Maddie feel comfortable and she even encourages her to bring a friend along when she has sunscreen put on,” Jill said.
Cokato Elementary Principal Lorene Force explained the importance of communicating a child’s needs and being honest and upfront with the school in order to receive the needed attention.
“We want to be responsive to it,” Force said.
Maddie has connected with three other kids from across the state who also have JM.
“She’s happy to know she’s not the only one,” Jill said.
Now, with more strength and less pain, Maddie is able to participate in sports and other activities that were not possible before.
She enjoys doing many things, including participating in Brownies, gymnastics, and swimming. Maddie also loves to write stories and poems in her journal. Below is one of her most recent poems.
By Maddie Schut
One season like the season before.
There once was a season with leaves.
There once was a season with birds.
There once was a season with open pools.
There once was a season with freezing weather.
All the seasons became friends.
For more information on JM or to show support for a cure, visit www.curejm.com.