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Marathons are run against the clock, each runner trying to beat his own time. Two St. Albert men just ran the Boston Marathon on April 21 in hopes of helping another local man racing to fight a little-known debilitating disorder that is rapidly depriving him of a quality life.
Rev. John Luth of the Christian Reformed Church of St. Albert and Randy Mann, a manager for the federal government, both avid runners, qualified to run in the prestigious Boston Marathon. They weren’t after the $150,000 prize, just the camaraderie of running 26 miles from Hopkinton to Boston with 22,000 other runners from across the world.
"Boston has the reputation of being the one most people would like to run," says Mann.
"It’s every runner’s dream," Luth adds.
This was Luth’s eighth marathon and Mann’s fifth. Both are hardened physically and mentally to the challenges and pitfalls of running. But their sinewy toughness covers a profound compassion for people who have lost their mobility.
When the two runners heard that Joel Kleine, 33, a congregation member had developed Friedreich’s Ataxia, a progressive disorder of the nervous system, muscles and heart, they decided to help. Both runners dedicated the Boston Marathon as fundraiser for the Friedreich’s Ataxia Research Alliance (FARA) and successfully raised $2,000.
"When [Kleine] first told me, I had never heard of Friedreich’s Ataxia. Nobody else seemed to know about it. We’ve heard of MS, cerebral palsy, cancer, Lou Gehrig’s disease. But I’d never heard of anyone doing something for Friedreich’s Ataxia," says Luth.
Friedreich’s is part of the muscular dystrophy family and the onset is usually around 10 to 15 years of age, but it can be diagnosed later in life. Symptoms include an uneven gait, loss of balance and co-ordination affecting the legs, torso, hands and arms, possible speech and swallowing difficulties, muscle weakness, loss of sensation, skeletal abnormalities such as curvature of the spine, hardening of the heart walls and possible development of diabetes.
Doctors can treat the symptoms, but there is no known cure. At the moment, most patients progress from using a cane to a wheelchair, and often die at an early age. Although ataxia affects the body, mental capacity is not diminished.
"For me, just doing something for the family and showing them we were beside them as they walk this journey was important. It was a blessing to run the Boston," Mann says.
And in turn Kleine and wife Amanda feel fortunate to have a whole congregation that has pitched in with practical assistance cleaning snow, delivering meals, babysitting and helping with handy-work around the house.
Kleine is a half-time Grade 5 teacher at Edmonton Christian School and graduated from King’s University College in 2001. Back then he also played the bass and mandolin with The Splendor Bog, a band that tried to catch the Celtic wave.
They sold 3,000 copies of their first recording, but family demands overtook the gruelling, poorly paid existence of touring and the band dissolved. But in an ode to his musical roots Kleine built a recording studio in his Forest Lawn home and continues playing guitar for school functions.
Life was good. Amanda was a stay-at-home mom and Kleine was embracing his passions. In his first year of teaching the couple had a habit of going for an early morning walk before the day started. "I was all over the place. My legs felt weak. My feet didn’t go where I wanted to go. Sometimes I had to hold on to Amanda."
One doctor suggested bursitis and treated the irritation to relieve Kleine’s limp. But things kicked into high gear four years ago. Each night before going to bed, his feet developed a tingly, burning sensation, "Like there’s insects crawling on your skin."
His balance worsened and his stamina depleted at a remarkable rate. "Two years ago I was setting up my bulletin board and was absolutely drenched in sweat, absolutely wiped."
He was tested for sleep apnea to no avail. He developed chest pains and constantly had sore legs. "I couldn’t go for walks. I would stumble on jelly legs." His last walk was taking his son Noam, 4, Halloweening around the block.
He was booked for a myriad of tests including MS and an allergy to gluten. Eventually Dr. Mary Lou Myles, a neurologist, tested him by sending shock waves through his body to see how the nerve impulses operated. She discovered Friedreich’s Ataxia.
This degenerative hereditary disorder affects primarily families of north European descent. As with all inherited disorders, it affects males and females and is passed down when both mother and father are carriers. When both parents are carriers, children have a one in four chance of developing the disorder. "One of the first things I thought of ‘Are my kids going to get it?’"
He is taking a new drug advocated by FARA. Idebenone, although tested in the United States and Europe, is not yet highly available in Canada and adds $240 a month to their medical bills.
Life has changed dramatically for the family. Kleine limits playing guitar, rests a great deal and does physical therapy. Amanda has picked up two shifts at the St. Albert Public Library to help pay bills and grandparents drop by more often to help care for their two young boys.
As for Luth and Mann, Kleine said, "It feels very flattering and humbling that they would go through so much for me. Even though they say it’s for fun, it’s a lot of hard work. That they made it their focus gives me a boost."
Either through solid training, experience or luck, neither veteran runner suffered any mishaps. "The magic of the event carries you through to the end," Mann says.
The marathon course ran through several small towns over a series of hills. Luth, whose time was 3:22, voices only one comment about the run’s difficulty. "The course runs mainly downhill towards the sea. It was tough on the quads." Mann came in at 3:51.
There were plenty of inspirational stories — children high-fiving along the way, a woman running with a C-leg, a man running while pushing his disabled son in a special carrier and soldiers marching the distance with packs on their backs. "One runner fell before the finish line and crawled across. Another was weaving and two other runners got him under the arms and helped him across."
About 500,000 spectators lined the course, a wall of faces cheering and motivating the runners. At Wellesley College, an all-female institution, control barriers were set up. "You could hear them screaming long before you could see them," Mann says.
Both runners are pleased with their times and they plan to take a break to assess any future marathon plans. But for Kleine the clock keeps ticking. "I’m pretty hopeful. Medicine has grown in leaps and bounds every year. If I can last another five to 10 years without being in a wheelchair, there’s a good chance there will be something that will help."
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