A Step Ahead of Expectations : Overcoming Rare Disease, He Walks Again

Six years ago, he was like any other 14-year-old boy, tossing a football with friends and preparing for the high school freshman team.

Then the symptoms began. He became fatigued, developed a rash, lost weight and suffered severe muscle pain.

Soon, he couldn’t walk, and his condition was diagnosed as juvenile dermatomyositis, a rare inflammatory disease of the muscles and skin.

Now, Ben Malagon is on his feet again, having walked a short distance for the first time in years only last week.

This Thanksgiving, Malagon, 20, and the family members who stood by his side in support have much to be thankful for.

“I always knew this miracle was going to come,” said Lydia Malagon, tears welling in her eyes as she watched her son slowly walk back and forth during a therapy session this week at Children’s Hospital of Orange County.

“It is a promise that God gave me that I’ve been waiting for all these years,” she said. “I knew it would come before Christmas, I just didn’t know which one.”

Malagon surpassed his therapist’s expectations, walking sooner than anticipated, and he has succeeded in other ways as well. Malagon missed most of his high school days, but he graduated in 1993 only one year behind by completing two years of schoolwork in one.

When his ability to walk progresses, Malagon intends to enroll in a community college. Inspired by his surgeon, he plans to major in pre-medicine and become a doctor.

It has been a long journey toward recovery for Malagon.

That autumn, at age 14, when he should have entered high school, Malagon was instead admitted to CHOC, where doctors told him that despite his severe condition, he would one day walk again.

“I didn’t believe the doctors because I thought they were just keeping my spirits up,” Malagon said.

The cause of juvenile dermatomyositis, which belongs to the arthritis family, is unknown, but it is not believed to be caused by infection.

At one point, a surgeon placed an IV in his body so food and medication could be delivered through his bloodstream. He was 14 then and had major bleeding and inflammation in his gastrointestinal tract and could not eat properly.

Later, for more than a year, Malagon endured chemotherapy and was treated with cancer medications that are used on some patients to treat severe autoimmune diseases.

During that time, Malagon’s family moved out of its Perris home and into the Ronald McDonald House, a three-story shelter in Orange for families of children hospitalized with serious illness or injuries.

“Our family has learned a lot from this,” said Lydia Malagon, who home-taught her two youngest children, now ages 17 and 18, while Malagon was in the hospital. “There is no anger, bitterness or resentment. Every hospital visit has become a learning experience.” The seven family members can now take Malagon’s blood pressure, order his medication and know how to properly handle needles.

When Malagon went home, the family’s entire home was stripped of carpeting to make it easier for him to navigate in his wheelchair, and the living room was converted into his room, equipped with a lift used for transferring Malagon from bed to wheelchair.

Although still crippled, Malagon decided to attend school his junior year, after having been privately tutored for his first two years. His mother attended every class with him because he was still extremely weak.

“It was hard getting back into the swing of things because it was different in the way the kids and the teachers treated me,” Malagon said. “They were always afraid (that) if something happened they wouldn’t know what to do.”

In January, 1992, Malagon returned to the hospital after the disease flared up, but was healthier and determined at 18 to graduate from high school. So he took a full course load, an elective during lunch hour, and night school to graduate a year later.

“It seems like once I lost my ability to walk I got smarter,” said Malagon, explaining how he managed to get A’s and Bs on his report cards. “I made up for it in other places.”

Malagon used to be an avid skateboarder, bicyclist, hiker and swimmer. Now, he constructs model airplanes and cars and even planted a garden in his precariously sloped and rocky back yard.

“I’ve learned not to take things for granted, like getting up in the morning--it’s a gift,” Malagon said.

Since graduation, Malagon even had a construction job in Santa Clarita after January’s earthquake, installing piers on which mobile homes are propped. Even though he couldn’t walk, he could crawl under the mobile homes, dragging his legs.

But he returned to the hospital last month to begin receiving the physical therapy he believed would finally enable him to walk again.

Malagon’s therapist, Katie Thompson, was surprised when he walked 80 meters at the hospital last Friday; she thought it would take longer before he could cover such a distance.

During therapy, Malagon has worked to straighten his legs, which were bent from years using a wheelchair, and now he is strengthening his leg muscles.

“Ben can do anything and everything,” Thompson said. “I’m his cheerleader now. The only thing he needs me to do is take him on and off of his mat--and that’s amazing.”

“I want to be just like everyone else--to run, to be able to do what I want,” Malagon said. “So I came back because I want to walk bad enough and I’ll do whatever it takes to do that.”