Long bike ride breathes life into CF research

Long bike ride breathes life into CF research

By: Aaraksh Siwakoti
Wednesday, July 2, 2014 1:14:22 MDT PM
Link to story: http://www.thecragandcanyon.ca/2014/07/02/long-bike-ride-breathes-life-into-cf-research

There were tears of joy and there were tears of exhaustion for the riders of GearUp4CF as they made their way to the final stop of the grueling nine-day 1,200-kilometre bike ride from Vancouver to Banff.

As they hugged family members and friends, who had waited nearly two hours at the ‘Welcome to Banff’ sign for their arrival, the riders congratulated each other for finishing the ride aimed at raising awareness and funds for Cystic Fibrosis research.

“Some of me feels exhausted and some of me feels absolutely light,” said Walter Brennen, who rode in memory of his daughter Joanie. “It feels fantastic having achieved your goal and to just know it’s for a good cause.”

Like so many others who did the GearUp4CF ride, Brennen has been affected by CF, not once but twice.

His daughter Joanie passed away from the fatal genetic disease, which mainly affects the digestive system and lungs, at the age of 12 and his younger daughter Ali is also a CF patient but is one of the fortunate recipients of a double-lung transplant.

Brennen described the difficulties of seeing what the disease does to someone and how it affected his family.

“The disease wrecks lives,” he said. “It takes over and stops people from doing things. My older daughter died 11 years ago from the disease, and when my younger daughter was 18 years old her lungs were so congested that basically she was on IV antibiotics 50% of the time to try and keep the bacteria away. A walk around the block was a two-day plan, the disease had basically stripped her life away.”

Although there is no cure for CF, a double-lung transplant, such as the one Ali received, can change the life of someone affected by the disease dramatically.

“It’s like night and day,” said George Keulen, the 32-year-old received his transplant in 2010. “Cystic Fibrosis was killing me, I had only about four months to live before I had my transplant, I was on oxygen 24 hours a day … . So to have my transplant and gain back my strength and to take on a feat such as this, there are no words to describe what my transplant has given me.”
An emotional Keulen added that this nine-day ride was the one of the best ways that he could honour his donor.

“When you get very sick with CF you’re life is so restricted and all you’re doing is breathing — it becomes your full-time job. And a transplant can bring hope for a whole new life,” he said. “And that’s what I have been feeling and experiencing these past nine days, just a whole new life that I never thought I’d be able to have.

“My doctors told me after my transplant ‘I’ve been given these lungs to go and live’ and part of doing that was this ride. This is me living and this is me honouring my donor.”
Raising funds was each rider’s main goal and so far they have managed to raise over $350,000 together.

But 65-year-old Bill Markvoort’s unique goal of $65,000 was one with more significance than his age.

Markvoort’s daughter Eva passed away in 2010 after her body rejected the lung transplant she had received. But before she did, Eva had blogged and made a documentary about her experience with the disease called 65_RedRoses.

“I’m 65, my daughter had the blog, and 65 roses is a malapropism of Cystic Fibroses, so I did a play on that name,” he said, explaining the origin of his team name 65for65Roses. “Janet, my wife, then said to me ‘well if you’re going to do that then you might as well raise $65,000’ and I said to her that I’d rather climb the mountains and bike than raise that kind of money. But it worked and we had support from so many different places, it was just so heartwarming and absolutely beyond my wildest expectations.”

Markvoort exceeded his goal by raising over $76,000 and was the top fundraiser this year because of his efforts with help from his wife and daughter Annie.