St. Louis boy overcomes disease to tackle triathlon

Friday, August 31, 2012 | 6:00 a.m. CDT

LAKE SAINT LOUIS — Joan Mackay wanted to keep two things in mind as she swam in her first triathlon: "Tell myself to be calm, and make sure Zach has fun," she said.

Zachary Blakemore, 12, is one of Joan and Brian Mackay's 22 grandchildren. He has a rare, progressive, degenerative disease of the brain and spinal cord that impairs his coordination and motor abilities. For years Zach had watched his mother, Natalie, and grandfather Brian train for the Lake Saint Louis Triathlon, then wondered aloud when he'd be able to race.

But Zach uses a wheelchair, and completing the triathlon under his own steam wasn't possible, so his family decided to give him a hand Saturday.

Joan, 56, would take the first leg in the Olympic-distance triathlon — a one-mile swim around Lake Sainte Louise, with a line to Zach's raft tethered to her waist. Zach's father, Todd Blakemore, would paddle a kayak next to Zach's raft to make sure he was safe.

When Joan and Zach finished the swim, Team Zach would run to the transition area, where Zach would be secured in a covered trailer attached to the back of his grandfather's bike. Brian Mackay, 57, would then pedal his grandson 24 miles for stage two.

Finally, Zach would finish the race pushed in the same trailer — converted now to a jogging stroller — by his mother running six miles.

Brian Mackay said Team Zach was inspired by Rick and Dick Hoyt, a Boston-based father-and-son racing team that has completed more than 1,000 races, including marathons and triathlons. Of the 247 triathlons the Hoyts have raced in, six of them were Ironman competitions.

Because Rick's brain was deprived of oxygen when he was born in 1962, he was diagnosed as a spastic quadriplegic with cerebral palsy. Eventually, he became interested in triathlons, and his father, Dick, has been racing with him, similar to the way Zach's family raced with him.

Zach's affliction, Pelizaeus-Merzbacher disease, is one of a group of disorders known as leukodystrophies, according to the National Institute of Neurological Disorders and Stroke. The disease is hereditary and is caused by the body's inability to form myelin, the fatty covering that insulates the brain's nerve fibers and allows the efficient transmission of nerve impulses.

Along with the progressive physical deterioration, people with Pelizaeus-Merzbacher disease have impaired language and memory functions. There is no known cure, and as with motor neuron diseases such as amyotrophic lateral sclerosis, also called Lou Gehrig's disease, leukodystrophies typically result in early death.

The U.S. National Library of Medicine estimates that 1 in 200,000 to 500,000 males in the United States have Pelizaeus-Merzbacher disease. The condition rarely afflicts females.

Early before the Saturday race, Team Zach supporters were sprinkled throughout the crowd. The back of their green T-shirts carried the motto, "Where limitations are forgotten, differences are celebrated." On the front was the logo for Unlimited Play, a nonprofit organization inspired by Zach and run by his mother that "helps to plan, design and build fully accessible playgrounds that allow all children — regardless of their abilities — to play together," according to its website.

"Our goal is just to finish," Natalie Blakemore said. "But he wants to win." For weeks he'd been teasing his mother about her slow training times. (Team Zach would finish in 3 hours, 46 minutes.)

As start time approached, race announcer Mark Livesay of Ultramax Sports said over the loudspeaker: "We're pulling for you, Zach. We're so happy you're here, and we're cheering you on." Zach responded with a huge smile.

A few minutes later, just before 7 a.m., his father gently placed Zach in the raft. His grandmother got into the water, tied the raft to her waist and fixed her swim cap. The starter's horn sounded, and that smile filled the raft.

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