Photos by Samuel Hoffman | The Journal Gazette Maddie Dean, 7, at tae kwon do practice. Maddie suffers from juvenile dermatomyositis, and the martial arts give her confidence and exercise.
Maddie has just recently been able to play outside like other kids.
Thursday, December 03, 2015 1:53 am
In this corner, a 7-year-old
Steve Warden | The Journal Gazette
Angela Dean’s email begins this way: "Our beautiful 7-year-old daughter, Maddie, is the light of our lives."
It is a sentence any parent could write about their child. It’s a declaration of love; a sharing of pride; a simple testament to Angela’s and her husband Matt’s most cherished possession.
But there was more. The email continued with a plea.
Maddie, wrote Angela, has juvenile dermatomyositis, or JD, an autoimmune disease that is so rare it affects only two to four children in a million in the United States.
It’s a disease in which the body’s immune system attacks its own cells, affecting the heart, lungs, skin and muscles. Complications can result in ongoing pain, disfigurement, and possibly death.
Chances are you haven’t heard about it until now, which is partly why Angela Dean sent the email. She wants the public to know such a devil exists. That, and there will be a Sept. 20 5K run/walk called "Miles for Maddie," which is a fundraiser – not for the Dean family, but for the Cure JM Foundation, which funnels all donations toward research.
So far, there is no cure.
Being a kid again
In the backyard of her typical, modern two-story home in a typical west-side subdivision are items that are normal to most families with children, but are wonderfully unique to young Maddie Dean.
There are toys in the backyard.
"This is the first summer when her toys have been outside," says Angela, sitting at her dining room table, with a bubbly Maddie at the other end. By now, she’s dabbed away her tears of telling her daughter’s four-year struggle with doctors and drugs and pain and fear. "She’s learned how to ride a bike this summer without training wheels. This is the first summer she’s been a, quote, regular kid. It’s been a joy. But in the back of your mind, you know a cold, a sunburn, being exposed, could send her immune system back into attacking her body."
It’s one of the insidious natures of the JM beast; that it feeds off the sun. Even a mild sunburn, Angela explains, can kick the immune system into gear, which, in turn, could cause Maddie’s disease to flare up.
However, this has been an exceptional summer for Maddie, who, at her mom’s mention of her playing baseball, runs into her room then reappears with her Wildcat League perfect attendance medal and a ribbon she won for her hustle.
It’s been a good summer because the disease seems to have gone into remission, which can be its nature. Except it could return at the slightest provocation.
Local physicians and doctors at Riley Children’s Hospital in Indianapolis found the right combination of steroids and medications and preventive measures, in addition to exercise, to enable Maddie to go outside and play, mostly in the evening’s shade, but not always.
Covered in sun screen with industrial-strength SPF and wearing special clothing, Maddie has literally stepped from the shadows within her home and into a world fraught with warning signs.
"I don’t care anymore," says Maddie as she gnaws on an apple. "I still can do, like, what most kids do. There are some things I can’t do, though."
And with that, she climbs from her chair, sits on the dining room floor with both legs splayed behind her, then leans way back. "I can do a backflip! I don’t think any kid can do a backflip!"
These days she is taking tae kwon do classes twice a week to continue working muscles that she didn’t have a year or two ago.
"I tell her, ‘You have this disease; it doesn’t have you,’ " Angela says.
Fighting the battle
Maddie was 3 when the first symptoms appeared December 2011.
Her cuticles were red, and she had a rash on her face that didn’t go away, which prompted Matt and Angela to take their daughter to see their pediatrician.
"He looked at it and said it looked like a virus; a fever; like she just got over being sick," Angela recalled. " ‘But it could be a rare disease that I’ve only seen once in my career.’ "
More tests were taken.
"If a pediatrician calls at 7:30 in the morning, it’s not good," says Angela. "He called and said the bloodwork showed that it was this a rare disease. Fifteen minutes later his nurse called, and 15 minutes after that, the Riley (Hospital) nurse called and said (Maddie’s) numbers are so high ‘we need to get her here.’ "
When severe head pain caused Maddie to scream, physicians at Riley performed a spinal tap. According to Angela, "Fluid came shooting out. They couldn’t control it. Her vitals dropped and they almost lost her.
"We’re standing outside, dropping to our knees, because that’s all we can do at this point – just pray."
Because of the vast amount of steroids used, Angela said Maddie "blew up. The water retention. The puffiness. She put on so much weight, she has stretch marks on her legs."
Doctors realized that it was the steroids that caused the pain in her head, so they suggested slowly removing the drug from her.
In the weaning process, Maddie caught a cold, which sent her immune system into full alert. "So we started all over again," Angela says.
Square One came almost exactly two years after the initial diagnosis: December 2013.
Now here she is again, recently steroids-free.
Angela Dean looks across the table at her daughter and shakes her head. "She looks healthy, but …"
Says Maddie: "The way to tell if I’m sick is I’m not talking."
On this particular mid-morning at her dining room table, the chatty Maddie must have been feeling pretty good.
"I still get choked up," Angela says. "I have to try to hold it back. It’s hard because (the disease) is so rare, people don’t get it. It’s frustrating because you look at these pharmaceutical companies, and I don’t know when care became about money.
"It’s a kid, you know. … You look at her and you can’t see it. People see her running around the playground and they say, ‘Oh, she’s cured.’ No she isn’t. She’s feeling better, but what you don’t see is when she comes home, she’s on the couch, exhausted because she was running around, being a kid. Usually kids keep going and going and going. She has to take breaks."
As of late last month, 77 people had signed up for the "Miles for Maddie" 5K run/walk, which will begin with a 1 p.m. registration and 2 p.m. race at Summit Middle School, 4509 Homestead Road.
"I was aiming low at 100, but it would make me feel so good to see 200 people," Angela says.
"It’s up to the parents and the families of children with this disease to raise the money to give to the doctors to find a cure, since we don’t have Hollywood or these big spokesmen like some of these diseases do. … The ultimate goal is to raise money, but also to raise awareness."
As for Maddie, no, she’s not going to run. But she’ll be there. And if Sept. 20 is a sunny day, she’ll be wearing sun screen, her protective clothes, and the smile of a little girl who just wants to be a normal kid.