ALS doesn't stop Bartlett couple's marathon dream

It was around mile marker 25 that they woke up Denise DiMarzo.

Wrapped in a blanket, the 49-year-old Bartlett woman had been napping in a wheelchair made specially for running, accompanied by two friends and husband Chris Benyo, who pushed her through the 26.2-mile marathon course.

For the last 0.2 miles, 15-year-old Leah and 8-year-old Maddie, Benyo and DiMarzo's daughters from previous marriages, joined them.

Her face broke into a smile.

Dozens of friends and family members cheered as the couple crossed the finish line May 6 at the New Jersey Marathon, fulfilling a dream to one day run a marathon together despite DiMarzo's 18-month fight with amyotrophic lateral sclerosis, better known as Lou Gehrig's disease or ALS.

"It was a day filled with hope and love; I will never forget it!" DiMarzo wrote in an email after the race.

"It was awesome," Benyo added. "It was not only the most difficult marathon of my life, but it also was just the best because Denise could share it with me."

<b>An uphill run</b>

It was summer 2009, while they were still dating, when DiMarzo took Benyo, 47, to her hometown in New Jersey, along the Atlantic coast.

They spent time together taking leisurely walks down a boardwalk - the same one they ran across - where they first discussed one day running a marathon together.

In the years that followed, the two got married, made Bartlett home and kept up with rigorous workout routines that they both enjoyed.

Then in December 2010 - just six months after their wedding - the couple were hit with some of the hardest news they ever had to hear: Denise had been diagnosed with ALS.

The disease affects nerve cells in the brain and spinal cord that control stability and movement. Over time, people with ALS lose muscle strength and coordination, making it hard to do simple tasks like walking, getting out of a chair, even swallowing and breathing.

According to the ALS Foundation, the life expectancy for someone with the disease averages two to five years from the time of diagnosis.

"It was kind of a little bit of a shocker and changed the way we thought our lives were going to turn out," Benyo said.

Before her diagnosis, DiMarzo held a job at Schwarz Supply Source in Wheeling and was a "workout fanatic," Benyo said. She particularly loved rollerblading and would spend an hour each morning doing everything from stretches to core to cardio. She picked up running just a few months before meeting Benyo on the dating website eHarmony.com.

"She was in really, really good shape," Benyo said.

But then the pains came in her lower back and legs.

"She would just be shopping or something and she'd fall down randomly," Benyo said. "We were hoping it was something that could be fixed through physical therapy."

In the past year and a half, DiMarzo has traded her love of exercise for walkers and wheelchairs.

"We were very active," Benyo said. Besides running they enjoyed cross-country skiing, biking and walks. "That's kind of been the hardest adjustment, just changing the way we live our lives."

</b>Unique preparation</b>

Despite all the changes they have had to make, the couple were determined to fulfill their marathon dream, even if it was not in the way they had envisioned.

Kim McIver, special events manager for the Les Turner ALS Foundation, helped make it happen.

"Chris wanted to make a statement with this race. He wants people (touched by ALS) to know that you can still achieve your goals together," she said.

Benyo - a gym teacher at Meadow Glens Elementary School in Naperville who has run more than 30 marathons in at least 20 states - originally wanted to run with DiMarzo all the way from Bartlett to the New Jersey shore, and arrive in time for her 50th birthday in August. That goal proved too lofty for DiMarzo's declining health.

After deciding instead to try the marathon, Benyo progressed from training on his own to pushing the empty wheelchair to running with daughter Maddie in the seat to finally taking DiMarzo out on 14- and 20-mile runs.

Just a few days before the marathon, Benyo had to make a doctor visit, and during the marathon, everything didn't go smoothly.

"I had back and neck issues prior (to the race), and I seemed to handle those all right, but I started having some calf issues later on in the race," Benyo said. "We had to do a little bit of walking."

"Physically, it was a little bit harder than I thought it would be on me," he added. "It makes a difference without using those arms - you take them for granted."

Before the race, Benyo also had concerns about transporting DiMarzo in a wheelchair-accessible van to and from the airport - a service that cost more than $400. The Les Turner Foundation came up with the money.

"They said, 'It's the least we can do.' That was just really, really nice of them," Benyo said.

<b>Strong finish</b>

Benyo said he may not have made it through the marathon without the support of his co-worker Kyle Mitchell and Mitchell's girlfriend, Meredith Kline. Together they finished the run in just under five hours.

"It was hard on me and my friends Meredith and Kyle; they pulled me along," he said. "They weren't about time, they were about staying with us and sharing the experience."

McIver was one of the many friends to witness Benyo and DiMarzo cross the finish line.

"Everybody was relieved that they finished and they accomplished their goal," she said. "They definitely woke the crowd up when they were going through the finish line."

Besides finishing the race, the couple also met their goal of raising $1,000 in donations for each mile they ran. The total reached more than $28,000, a number that continues to grow long after they crossed the finish. All the money will be donated to the Les Turner ALS Foundation.

Benyo said several people have called him and his wife an inspiration, but he doesn't believe they're doing anything exceptional.

"We're just trying to make our best out of a bad situation, and I guess people find that inspirational," he said.

Benyo and DiMarzo's perseverance has drawn the attention of people across the suburbs and nation.

Last September, DiMarzo started writing about living with ALS on a blog called Adventures in Losing Stability.

"She talks about serious things, but she doesn't lose the humor about things she's had to deal with," Benyo said. "Her blog has really been helping other people who are living with this disease."

The Les Turner Foundation honored the couple in April by giving them the Patient/Family of the Year award, and the couple took part in a May 2 photo shoot for the June issue of Runner's World magazine.

"It was something we wanted to do. We wanted to run a marathon together. This is the closest we can get," Benyo said. "It was better than we ever expected it to be."