Emily Nicks

Three cheers for a winning team

Push yourself too hard at the gym and plan on waking sore. Pull a muscle twisting the wrong way and feel pain affecting your mobility. Normally these injuries heal quickly without medical treatment. But what if the problem persists?

Emily Nicks loves to play softball. She played a lot of it as a 6-year-old in her hometown of Lemoore. The little athlete certainly felt sore on occasion. But shortly after finishing first grade, Emily began to suffer from inexplicable, unrelenting muscle pain.

Even as muscle weakness started interfering with her active lifestyle, a bothersome rash had already appeared on Emily’s thighs. It soon spread and covered her face like a heart-shaped red stamp. By mid-July Emily was too weak to walk.

The Nicks’ quest for answers led them to Children's Hospital Central California, where Emily’s parents, Ryan and Donnell Nicks, learned their daughter had a rare autoimmune disease of the muscles and skin, known as juvenile dermatomyositis (JDM).

“Emily’s disease was particularly severe and required all known treatment,” says Dr. Dowain Wright, medical director of pediatric immunology and pediatric rheumatology at Children’s. Before current treatments were discovered, one-third of JDM patients died and one-third became severely disabled. Potent medical therapies, including steroids and immune suppressants, have plunged the death rate to just 1 percent.

“We were so discouraged,” says Ryan. “But when we met Dr. Wright, he was like, ‘OK let’s go. Let’s kick this thing.’ We were so relieved.”

Emily goes to bat against JDM

Dr. Wright’s aggressive treatment regimen began in August 2006, and initially involved three days of IV infusions and one day of physical therapy per week, as well as daily oral medications.

Dana Reed, pediatric physical therapist II at Children’s, was faced with the challenge of providing physical therapy to a child who could not walk, stand or sit unsupported. “We worked on things that would allow her to feel like she could do something on her own,” says Reed. “We did a lot of things lying down.”

“I’ll never forget when Donnell called from rehab and says, ‘Emily rolled over today,’ that was such a big deal,” says Ryan. “She went from her stomach to her back. It doesn’t sound like much, but when you lie there lifeless, it’s a big deal.”

“We did some give and take,” says Reed. “We’d make up dances and cheers and she liked that. Then I made her do hard and scary things.”

 “Dana wouldn’t let her quit,” says Ryan. “At first Emily probably hated her because she pushed her.” Emily grinned and nodded to confirm her dad’s speculation.

“She was a little spitfire – which is good,” says Reed. “Crawling up and down a wedge mat was one of the hardest things she had to do. It required upper body and abdominal strength.” Reed remembers the tears of pain and fright little Emily expressed throughout the following year. “She had a lot of pain,” says Reed. “In March 2007 she had nine out of 10 on a pain intensity scale.”

The star athlete hits a home run

Now in her seventh year of treatment for JDM, Emily visits Children’s only one day per month and her medication is effectively controlling the disease. Her battle has been long and hard. “She would be in tears most of the time and now she’s happy,” says Ruth Cross, registered nurse III at Children’s. “She told me recently, ‘Thank you, I wouldn’t have been able to make it without you,’ and I didn’t understand at first. But now that I think back on how much pain she was in, I know what she meant by that.”

Dr. Wright’s success in forcing Emily’s rare childhood disease into remission required patience and tenacity, and his strategy led to a big win. “To me this place is fabulous,” says Ryan. “There are no words to express how I feel about this Hospital.”

“Emily played on the volleyball team this year!” exclaimed Donnell. “I didn’t miss a single game.”

“She lost a lot, but just look at her,” says Ryan. “She’s doing really well now.”

Emily Nicks is back in the game.