BELDING — Jayde Stevens, 15, was barely 3 years old when she was first diagnosed with systemic juvenile rheumatoid arthritis.
Although the disease can be devastating, Jayde’s particular case wasn’t as bad as some, at least at first. For more than 10 years, her symptoms were minor and could for the most part be managed.
It wasn’t until last July that things took a dark turn. With no warning — and no obvious cause — Jayde began experiencing crippling arthritis flare-ups that left her in excruciating pain, unable to perform even the simplest tasks.
In a matter of weeks the athletic, active teenager went from running track and field events to being unable to navigate a flight of stairs unassisted.
Doctors desperate to ease her agony prescribed a host of painkillers — steroids, morphine, Vicodin — which eventually caused Jayde’s kidneys to go into complete failure. For months, Jayde was in and out of hospitals, doctors’ offices and emergency rooms. All the while, the pain continued.
Disease worsens in January
Because of insurance issues, Jayde’s wait to see a doctor specializing in juvenile arthritis lasted from March until November.According to Jayde’s mother, Becky Stevens, the situation came to a head in January. By then her daughter could barely walk and was taken to the hospital.
“She managed to shuffle into the emergency room,” Becky Stevens says. “They gave her morphine for the pain but it did nothing. Then they tried Dilaudid and within 10 minutes she had her first grand mal seizure. Her muscles contracted so tightly that she broke the tip of her finger. She was screaming in pain.”
That seizure, it turned out, was to be the first of many. Since then, Jayde has experienced what her father, Mike Stevens, calls her “episodes” at least once every three days, often more frequently.
Meanwhile, the disease continued to worsen. At present, Jayde is facing the certainty of hip and jaw joint replacement surgeries with more surgeries likely to come.
“Eventually, I’ll be in a wheelchair,” Jayde said in a matter-of-fact tone. “I don’t know when. It could be next year or it could be in 10 years. I’ve learned to accept it because that’s just the way my body is. I figure it could be worse; it could be cancer or something that would kill me.”
Trying to stay positive
Jayde admits that maintaining this positive outlook isn’t always easy. The pain from medication, the arthritis itself and weekly chemotherapy treatments can’t help but take their toll on the normally cheerful girl. She grows pensive when explaining the ways the disease has changed her life.
“This isn’t how I imagined my life would be,” Jayde said. “I planned on being a more normal teenager. I thought I’d be like everyone else, but now I’m totally reliant on everyone else to accommodate me. Sometimes it is so humiliating, like when I can’t get out of the shower by myself and have to call my mom or dad to help me because my legs don’t work or I can’t move my arms. I thought I would be driving by now and going out with my friends. I always feel there are limitations on everything I do.”
Jayde’s brush with self-pity is short-lived, however. She’s just not the type to indulge in pathos, regardless of circumstances. And she knows she’s not in this alone. Throughout her ordeal, Jayde has found hope and strength not only in the love and support of her family, but her friends and community as well.
“I still have tons of friends,” Jayde said. “Even though I’m on chemo I haven’t had anyone make fun of me for losing my hair. Everyone at school has been great.”
School family helps out
The staff and administration of Jayde’s school — Grattan Academy High School — have gone the extra mile in an effort to accommodate Jayde’s special needs, providing a small room where she can get the rest she requires mid-day.
Her teachers have done their part to help Jayde keep up with her schoolwork, though her treatment regimen often forces her to miss days or even weeks of class time. The school has hosted fundraising events to help the Stevens family deal with the ongoing expenses associated with Jayde’s disease.
One of these fundraisers is slated for 5 to 8:30 p.m. Monday at the high school. The event is open to the public. Additionally, the school office is available during school hours to those wishing to make a financial donation.
“The school has been amazing,” Mike Stevens said. “They’ve been incredibly supportive.”
Though her battle with juvenile rheumatoid arthritis will likely continue throughout Jayde’s lifetime and the pain will never go away entirely, she remains hopeful. Her circumstances may be extraordinary, but for all that she remains, at heart, a typical teenager.
“I’m hoping they find the right blend of meds; if they do, I might be able to get back into normal clothes,” Jayde says. “Right now I’m stuck in sweat pants because I swell up so easily. Normal clothes, that’s my goal.”