Detroit Lakes woman chronicles son's battle with near-fatal disease

When her son, Seth, was diagnosed with pneumonia, Cheri O'Neill of Detroit Lakes grabbed her camera on the way to the hospital, thinking she'd take a couple photos and document his trip. Little did the avid scrapbooker know she'd be dedicating an entire book to her son's nearly fatal experience.

On July 13, 2008, Seth was feeling a little sick. Three days later, he couldn't eat and was running a high temperature. O'Neill gave him some Ibuprofen to feel better, but it didn't work.

A few days later, O'Neill took her son to St. Mary's Innovis Health, where he was diagnosed with pneumonia and given medication. The next day his lips were swollen and it looked like he was having an allergic reaction.

"My son was diagnosed quickly because of Dr. Anita Jonason in Detroit Lakes," O'Neill said. "Dr. Anita diagnosed Seth before he even had one blister. In our book, she is a hero."

Seth was diagnosed with Stevens Johnson Syndrome.

"I thought, 'Oh, I'll remember that cause it's my brother's name,'" O'Neill said with a laugh.

Seth was having trouble breathing and was transferred to Fargo.

"Nineteen of the worst days of our life," she said.

Stevens Johnson Syndrome (SJS) is an emergency condition in which skin and mucous membranes react severely to a medication or infection. Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters, eventually causing the top layer of skin to die and shed.

What set off Seth's isn't known for sure.

"We will never know," she said of the cause. "A lot of people get it a second time and don't survive."

While the symptoms -- rash, fever, blisters, swelling -- can look flu-like, the disease is actually life threatening, and if untreated, can lead to death.

Other complications include blindness, lung damage, arthritis, chronic fatigue syndrome and more.

While in Fargo, Seth saw an ophthalmologist because many patients with SJS go blind.

Seth, fortunately, only has three types of eye drops he has to use several times a day.

O'Neill said when she heard "he's going to live and not going to be blind," she knew they could work though whatever conditions Seth might have.

As the disease progressed, Seth dropped 20 to 25 pounds and developed sores on his body but also inside his mouth, esophagus and stomach.

"I didn't get much sleep. They check your vitals every 30 minutes so they'd come in and wake me up," Seth said of his time in the hospital.

Plus, he'd try to eat but the taste was so bad from the sores in his mouth he would usually throw it back up.

O'Neill said the first time her son ate fast food, everyone rejoiced.

Seth said he wasn't in a terrible amount of pain, but "the day I got home, there were so many people waiting to see me, but all I wanted was to go to sleep."

Since Seth was out of commission during the summer, he didn't miss school, or watching the Summer Olympics because he had little to no energy.

Seth can't wear contacts on a regular basis anymore and his eyes water all the time, but it's a small price to pay for what he's gone through.

About a month after his hospital stay, almost all of his hair fell out, but it has grown back now.

He has scarring in one eye, and although they haven't had them tested, he more than likely has scarring on his esophagus and lungs as well.

Seth and Cheri said they were amazed at the community support. Jeff Krueger gave him tickets to WE Fest and Seth got to watch Brad Paisley from the side of the stage in his wheelchair.

Teachers sent cards every day to Seth, many people -- some he didn't even know -- posted comments online, "which definitely kept my spirits up," he said.

O'Neill said although her son never complained or wondered "why me," she had a harder time dealing with her son's illness. Until she found Jean McCawley's support group online.

McCawley's daughter, Julie, suffered from SJS, and Discovery Channel is running a re-enactment of Julie's experience, Mystery Diagnosis, on March 22.

For the McCawley story, visit the online support group www.sjsupport.org .

"It's like your little world has come crashing down. A lot of people on there get that," O'Neill said of the online support group. "I don't know that I could have made it through if it hadn't been for them."

Through the support group, O'Neill found other parents going through what she was. Thought to be quite rare, Cheri found out it really isn't that rare. Since it's not mandated to report the disease, many cases are not. But, according to the SJS Web site, there are least three to five new cases per day.

SJS can be caused by any drug, including over the counter children's Ibuprofen, the site says.

"Say you take a group of epileptics, there are 50 million epileptics in the world. One in 1,000 will develop Stevens Johnson Syndrome from their seizure meds. They know this. So, how rare is that?" McCawley said.

When someone from Mystery Diagnosis contacted McCawley to ask for some names of people with SJS, she gave them several adults to contact. But her daughter, Julie, begged to be submitted as a possibility also.

"The next day they called and said they wanted Julie," she said. "I was shocked. I personally didn't really feel I could do it."

Reliving the pain, she said, turned out to be the best therapy she could ever done. She was able to work through some of the emotions she had to tamp down when she was caring for her daughter.

"It was extremely emotional. It was the hardest thing I've ever done in my life, besides sit next to her in bed while she was suffering with it."

For the show, a make-up artist created the wounds on a baby doll from a picture of Julie. It looked so real, McCawley said, that she burst into tears because the doll looked exactly like her daughter did 15 years ago.

Julie came to the filming of the documentary, and got to see and understand what had happened to her at the start of her life.

"Even though she is visually impaired and there are a lot of side effects, she knows how lucky she is," McCawley said of her daughter.

She said she hopes people will watch the show and realize how asking doctors to prescribe this and that isn't always the healthiest choice.

"Pay attention to the side effects," she said. "Drugs are beneficial, absolutely, and we need medicine. But, we also need to be proactive in our health care, especially when we have the Internet and the resources."

Being healthy for the last year and a half, Seth said he's got a new perspective on life, even something as simple as getting his driver's license and enjoying the drive.

"'Enjoy the journey,' that's his motto," O'Neill said.

"Things can get worse," added Seth, who is now enjoying his junior year at Detroit Lakes High School.