Maddie Scheer of Cedarburg, who defeated a debilitating form of arthritis that attacks children, will be the center of attention at the Arthritis Foundation’s Jingle Bell Run/Walk
On Sunday, Nov. 2, 11-year-old Madison Scheer, a seventh-grader at St. Paul Lutheran School in Grafton who prefers being called Maddie, will be the center of attention at the Arthritis Foundation’s 5K Jingle Bell Run and Walk at the Milwaukee Art Museum.
Maddie is this year’s honoree and will speak at the event, describing her fight with the painful, debilitating disease usually associated with older people.
She and her family — parents Sue and Jason and brother Jacob, 8 — will lead Maddie’s Merry Marchers team, which has 103 members so far, for research into juvenile arthritis.
This is the sixth year the Cedarburg family will participate in the event to find a cure for the disease that affects Maddie and 300,000 other children in the United States.
The first year was shortly after Maddie was diagnosed. Her parents pulled her in a garden cart. A small team included relatives and friends from their church and workplaces — St. Paul School, where Mrs. Scheer teaches kindergarten, and the City of Cedarburg, where Mr. Scheer is on the public works crew.
There are five types of juvenile arthritis. Maddie’s type — juvenile idiopathic arthritis, an autoimmune disease that affects joints and organs and causes severe pain — is the most common, according to the foundation.
Maddie, who was diagnosed with the disease when she was 6, is now in remission — able to ride her bike, play volleyball and basketball, run and even throw the shot on her track team without pain.
She wants to stay that way and is eager to find a cure.
Shortly before her sixth birthday, Maddie was having pain when she walked and had a high fever. Her pediatrician, Dan Hagerman of Cedarburg, initially thought it was a virus. But when Maddie got worse and the fever didn’t subside, he suspected juvenile arthritis and sent her to Children’s Hospital of Wisconsin in Wauwatosa, where she was diagnosed after numerous tests, pricks and pokes and put on a regimen of medications.
“There’s no test for it. They have to rule out everything else,” Mr. Scheer said.
“Basically, Maddie laid around and we had to carry her. It hurt too much to walk. We’re very grateful to Dr. Hagerman. He caught it right away. We’ve met a lot of families (whose children have the disease), and most of them didn’t get a diagnosis for months.”
After one year on medications, Maddie’s rheumatologist weaned her off the drugs over a one-year period.
Through the hospital and the Arthritis Foundation, the Scheers met other families affected by the disease, attended workshops and Maddie went to the foundation’s summer camp for children with arthritis.
“It’s awesome. Every year, I meet at least one new friend,” Maddie said. “Everyone there is so nice. They all know what you’re going through. They understand your pain and what kind of day you’re having. We help each other.”
On the last day, parents and siblings also participate and get to know each other.
“We have met the most wonderful people,” Mrs. Scheer said. “It’s like you’re part of another family and we all care about each other.”
Maddie was in remission for about a year after the first flare-up, but that changed in 2011 when she was 9.
“I remember it was a Sunday morning. I woke up, and it was hard to breathe,” Maddie said.
She was treated for pneumonia at a local emergency room.
“I wasn’t satisfied with that. I was certain it was a flare-up of her arthritis,” Mr. Scheer said. “I called Children’s and they had her put in an ambulance and brought to the hospital immediately.”
Maddie was hospitalized for four days. The linings of her heart and lungs were inflamed as well as her joints. In addition to her previous medications, Maddie had weekly steroid infusions and received a chemotherapy drug that had been effective against arthritis in studies.
After one year on the powerful drugs, she was slowly weaned off and has been in remission ever since.
Maddie is the only one of her camp friends in remission. Two have had hip replacements because of deterioration caused by the disease.
The Scheers credit not only the drugs, but also a Paleo diet that restricts all grains and processed foods.
In researching their daughter’s disease, the Scheers studied the effect of diet, especially gluten. After reading cardiologist William Davis’ book “Wheat Belly,” the Scheers decided to try the diet.
“We either all went on the diet or we didn’t,” Mrs. Scheer said. “We weren’t going to eat things in front of Maddie she couldn’t have.”
Since adjusting her diet, Maddie said she has more energy, her joints don’t hurt and she’s off steroids, which caused mood swings and bloating.
“Steroids made me look like I was a chipmunk,” she said.
Everyone benefited from the diet, her parents said. Her father lost 90 pounds, her mother 60 pounds, and her brother is more focused in school.
“My brother and I read labels all the time,” Maddie said. “If we have snacks at school, I ask to see the box.”
When people say the diet is too difficult to follow, Mr. Scheer replies, “When you see the difference — when your child is pain free, has energy and is enjoying life again — it’s not difficult.
“Every morning we gave her (chemotherapy and steroid) shots, we’re thinking, ‘What are we doing to her? What will the effects be in years to come?’”
Maddie is in a national registry of children with juvenile arthritis. The history of her disease, what she eats and other information are included to help researchers develop strategies for combating the disease.
“She’s our hero,” her father said. “She’s been through so much. She’s very mature for her age and she’s willing to talk about the disease to anyone who will listen.”
When asked to be the honoree, Maddie was worried about talking to such a large crowd and almost turned it down.
Now, she’s comfortable with her role and wants to drum up as much support as she can to make people aware of the disease and the need to find a cure.
Maddie created and filmed a music video to “Miracles” by the Newsboys that explains her journey. It’s posted on her page on the Jingle Bell Run and Walk website.
Maddie doesn’t let the disease define her, but it is her focus, and she’s determined to make a difference.
“I want to be a pediatric rheumatologist. There are not many in the nation and more are needed,” Maddie said. “But I may go into research. I want to find a cure for it.”
To join Maddie’s Merry Marchers, register at 7:15 a.m. Sunday at the Milwaukee Art Museum and wear a Christmas tree skirt and silly hat.
More information is available at www.jbrmilwaukee.kintera.org. To donate in Maddie’s name, click on Maddie’s Merry Marchers. Be sure to watch her music video.