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Run to fight spinal muscular atrophy

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A former Transcona resident is hoping a change of course will help bring more awareness and dollars to the disease that claimed her daughter.

Kristen McDowell and husband Michael Lucas, who live in Island Lakes, lost their six-month-old daughter Georgia to type 1 spinal muscular atrophy (SMA) in April 2009. The genetic disorder, estimated to be unknowingly carried by as many as one in 35 people, is a degenerative condition that affects children’s ability to walk, crawl, sit, eat, breathe, and swallow.

With sisters Calla and Maya, Georgia was the youngest, though McDowell hopes to continue Georgia’s legacy with the family’s newest addition, two-year-old Aria Evangeline, meaning a song bearing good news.

"Georgia was my most musical child. She could coo melodies before she could babble," McDowell recalled. "When she became paralyzed, music was the only thing that could calm her."

In order to help families avoid having to go through the same difficult times hers did, McDowell has helped raise over $50,000 through family fun days held each October around Georgia’s birthday. The events have welcomed approximately 500 people each year.

This year, the family is branching out to hold the Georgia’s Journey of Hope five-kilometre run/walk on Sun., Sept. 15. The event will begin at 9 a.m. at Home Run Sports (20 de la Seigneurie Blvd.) and will take participants on a loop of Island Lakes.

"This way we’re hoping that we’ll have people of all ages," McDowell said, noting there will be face painting, Japanese drummers Hinode Taiko, and mascots. "I hope people enjoy the moment, the ability to walk or run, be it pouring rain or a beautiful day. That’s something we often take for granted."

Though there is no cure for the disease, McDowell said she’s kept up with progress researchers have been making toward a cure.

"We really believe that spinal muscular atrophy can be cured, probably within five years," said McDowell, who keeps in contact with other families who have been touched by the disorder’s effects on Facebook and through their blogs. "Kids are living longer, which is exciting.

"The Wikipedia article (on SMA), because it’s updated all the time, has changed significantly since 2009. It used to be SMA – Type 1 – death sentence. Now, that’s not what it says."

McDowell said some children with the disorder are seeing lifespans extended from months to years, and one California girl, Gwendolyn Strong, is nearing her sixth birthday.

McDowell is planning to hold the run until there is a cure for the disease.

"If the run is a success, then we will do the run every year until there is a cure," McDowell said. "I don’t think it will be my lifetime job. I’m hoping this is something I have to do for another five years. I don’t want to be 60 and organizing the run."

Those interested in registering for the race can do so here.

For more information on Georgia’s Journey of Hope, visit the family's page.

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