By Kim HIlsenbeck

Chase Duley, 12, of Buda, wants to play baseball in the major league. He’s played on little league teams for several years and is now a pitcher on a select team – the Wranglers.

But he has some fairly serious hurdles to jump before he makes it to the big time.

He and his family are dealing with his diagnosis last year of juvenile dermatomyositis, or JDM. They spoke with the Hays Free Press recently about Chase’s experience with JDM.

“His disease is extremely rare,” his mom, April Duley, said. Only 17,000 children in the world have it.”

That’s about three in every million.

“Generally, of every three, two are girls and one is a boy,” April said. “So we say Chase is one in a million.”

Back in the spring of 2013, Chase was playing baseball.

“All of a sudden,” he said, “my muscles started hurting. “It felt like stinging and hurting at the same time.”

He told his mom and they kept an eye on the pain.

April said Chase also slept a lot, which was not typical for him.

“He’d be dead asleep when I got home from work. He’d wake up to eat then go right back to sleep,” she said. “I knew something was wrong.”

When the pain returned, they took action.

“It happened again the next week during a training session,” April said. “After that we called the doctor.”

Chase’s pediatrician, Dr. Anna Lincoln of Pediatric Junction in Buda, told the Duleys to wait one more week to make sure it wasn’t growing pains. After all, he was an 11-year-old boy.

But April said Chase suddenly got worse – and weaker – really fast.

“He couldn’t walk, climb the stairs, get in a tub,” she said. “I had to move his legs to get him out of the car.”

She praised Lincoln for getting Chase in to see a pediatric specialist in Austin, one of only two in the area.

“It’s very hard to get in to see them,” she said.

But another doctor who normally performs one of the tests was out of the country. And Chase continued to get weaker.

Lincoln sent Chase to Dell Children’s Hospital in Austin.

Multiple tests involving blood work and muscle tests, as well as an MRI and what’s called an EMG later, they heard the term juvenile dermatomyositis (JDM) for the first time. It’s a disease that causes extreme muscle weakness.

As if that wasn’t enough of a shock, they also learned that Chase has juvenile arthritis.

Both conditions are autoimmune diseases. For Chase to have both is even more rare than the JDM, according to April’s discussions with doctors.

What was Chase’s first thought when he heard he had JDM and arthritis?

“I had no clue what they were talking about at first,” he said. “And then whenever the doctors came in and told me what’s happening, I kind of figured it out.”

April said she didn’t know what to prepare for or what to expect.

“It’s very overwhelming,” she said. “Doctors have no idea what causes JDM and no cure.”

She equated the last year of their lives to a big roller coaster.

“He started getting better, it seemed, and then he would hit a brick wall,” April said. “Every time we think he’s doing good, then we take a huge step back.”

During all of the testing and issues last year, Chase had to drop out of baseball. He’s playing again this year, and April said his team is great about understanding that Chase can only play when he feels well.

How has his attitude been?

“He’s amazing,” she said.

She complimented Chase on his positive outlook and how he takes everything in stride. That’s not to say there aren’t fears – and sometimes tears – but he’s dealing with his condition quite well for a young boy.

Chase is also on several different medications, including a mild form of a chemotherapy drug called Methotrexate. He gets an injection about once a week. In addition, doctors put him on very high doses of steroids.

One of the symptoms of JDM, in addition to the muscle weakness, is a rash.

“He had a “Butterfly” rash on his face,” April said. “He also a rash on his knuckles, knees and elbows; when he flares it gets really bad.”

She looked at his elbows and knees.

“He’s not too bad today,” she said.

But he has to limit his time in the sun and wears a very thick sunscreen that has a slight tint so it blends into his skin and isn’t quite so obvious.

The Duleys have tracked his condition to see if they can find any triggers for flare ups. She said they just haven’t figured out what causes setbacks with Chase.

But even at Dahlstrom Middle School, April said things are OK with Chase, despite the rash and the weight gain Chase experienced from high doses of steroids. He can’t control the weight gain – it’s a side effect of the medication.

April said they also have to really watch to make sure Chase doesn’t pick up a cold or virus. Autoimmune diseases suppress the immune system, so he is more susceptible to illness than most other children.

“He also can’t have vaccine with live virus,” she said.

“We try to stay away from sick people, but a lot of kids with this disease are home-schooled,” April said.

When she and her husband got sick in November, despite quarantining themselves in another part of the house, Chase still got walking pneumonia. It happened extremely fast.

“And when he gets sick, he can’t take his medicine,” April said.

He takes a cocktail of medications aside from the chemo drug, including a Solu Medrol infusion (high doses of steroids). He was also using a topical medicine for the rash and he takes folic acid. And that’s a partial list. April said they are also going to start him on IVIG, a blood-derived product that has been used in the treatment of children with JDM. It consists of purified antibodies, according to www.cincinnatichildrens.org.

Because of his rare combination of JDM and arthritis, April said Chase was asked to participate in a medical research study in Maryland this summer.

Through it all, April said Chase is the one to comfort her when things get overwhelming.

“It is a lot of stress,” she said. “But we’ll get through it and find a way.”

And even though Chase said he knows it’s hard to get into the major leagues, he thinks he can make it.

Chase’s advice for other kids who go through diseases like his is, “when life throws you problems you fight back.”

Fund-raising event

A Cure for Chase 5K Run will take place at San Gabriel Park in Georgetown, TX on May 25. Visit www.cureforchase.com to learn more.