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‘Totally surreal experience’: Edmonton woman with rare disorder runs Boston Marathon.

Click to play video: 'Edmonton woman with rare genetic condition runs the Boston Marathon'
Edmonton woman with rare genetic condition runs the Boston Marathon
WATCH ABOVE: An Edmonton woman recently accomplished something most people could never do, she ran the Boston Marathon. And as Su-Ling Goh reports, she did it with a debilitating disorder – Apr 24, 2017

Shawne Flaherty has just returned from accomplishing the greatest thrill of her life – running the 2017 Boston Marathon.

The thrill is even greater for this 48-year-old- since she suffers from a rare condition and wasn’t expected to live past her teens.

“I work twice as hard as the average person for pretty much everything – but my parents instilled a lot of perserverance in me,” she explained.

Flaherty was born with Noonan Syndrome, a rare genetic condition that affects about one in 1,000 to 2,500 births.

“I was not supposed to live – no. And I was not supposed to be able to do as much as I do,” she said. “I was sick a lot but my parents strived for a very normal life for me.”

Noonan Syndrome caused a severe heart defect in Flaherty called pulmonary stenosis – along with a lifetime of muscle, joint, vision and hearing troubles.

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Doctors shied away from operating on infants in the 60s – but her condition worsened as she grew.

A few years later, her birth doctors said she needed heart surgery.

“If I didn’t have the surgery, I would definitely die. If I did have the surgery, I might die,” Flaherty recalls her parents telling her.

She was put into a hypothermic state and operated on.

“The outcome was not for certain,” she said. “They didn’t think it was going to work. But it did and 48 years later – I have not needed any further surgery, even my current cardiologist doesn’t know why.”

48-year-old Shawne Flaherty accomplished her goal of running the Boston Marathon this year. Shawne Flaherty

Flaherty credited her parents for pushing her to set goals and accomplish them. She always took part in gym class at school but it wasn’t until she was an adult that she really became interested in sports.

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She challenged herself to take a boxing class and then started tinkering with the idea of participating in a triathlon.

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“Then someone challenged me in 2009 to do a half marathon,” she explained. “There’s something about crossing a finish line after 21 kilometers – that you just think ‘oh my goodness I did that’.”

Since then, she’s completed 28 half-marathons in the past seven years.

“In 2014, a friend of mine challenged me to try one marathon. After I hit the finish line, my friends all laughed because the first thing I said was ‘oh I have to do that again next year’. ”

Flaherty said running became her solace during her father’s battle with Parkinson Disease.

“For me the turning moment was the same week that he passed. I went for a long run a couple of days after he died and I just felt this most incredible feeling and I thought this running stuff is for me.”

She began training harder – her muscles took longer to build because of her condition.

“After I did the first couple of marathons I started thinking maybe – just maybe – this kid that couldn’t walk when she was three – could qualify for Boston.”

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Flaherty works as a paralegal and recalls the day she received the news at work that she qualified for the marathon.

“I think [my boss] actually fell out of his chair when I screamed,” she laughed. “Sure enough, I got the confirmation that on April 17, 2017 – I would be running in the 121st running of the Boston Marathon. It was a totally surreal experience.”

She worked very hard for nearly two years to reduce her running time down to under six hours in order to qualify for the race.

It was a hot day out when the race finally arrived.

“I had a pretty good race, it was extremely hot that day. The course officials were telling people to slow it down. Most athletes were about 30 to 60 minutes behind our targeted time, but I finished.”

She recalls seeing dozens of fellow runners in the medical tents.

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Flaherty said she plans to run the race again and improve her finish time.

Her next goal is a 50 kilometer ultra-marathon to celebrate her 50th birthday in two years.

“I just approach it – one race at a time.”

with files from Su-Ling Goh

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