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Thursday, June 28, 2012 - Taber, Alberta - 31-year-old Marten deVlieger was born with cystic fibrosis, along with his sister. The father of two lives in Taber, Alta. and has developed the ChestMaster device, a High Frequency Chest Wall Oscillation (HFCWO) device which currently in clinical trials. He is photographed with one of his early prototypes in the shop on his dad's farm. (Chris Bolin for The Globe and Mail)
Thursday, June 28, 2012 - Taber, Alberta - 31-year-old Marten deVlieger was born with cystic fibrosis, along with his sister. The father of two lives in Taber, Alta. and has developed the ChestMaster device, a High Frequency Chest Wall Oscillation (HFCWO) device which currently in clinical trials. He is photographed with one of his early prototypes in the shop on his dad's farm. (Chris Bolin for The Globe and Mail)

‘Backyard ingenuity’ helps cystic fibrosis sufferers Add to ...

Marten DeVlieger was two months old when he was diagnosed with cystic fibrosis – an incurable condition that clogs the lungs and digestive system and drastically reduces sufferers’ lifespans.

For years, his mother would attend to him full time while his father was at work – making sure he took his dozens of pills and patting his back for 30 minutes up to three times a day. But by the time he turned 16, Mr. DeVlieger was tired of relying on his parents, who decided to move from Holland to the drier climes of southern Alberta soon after his diagnosis.

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So, with dreams of flying a helicopter but no way to do it on his own, he came up with a concept: a chest device that would mimic the traditional manual technique for loosening up mucus. He began scouring a nearby garbage dump for parts, playing with sewing-machine motors, off-centred weights, electrical currents and vibration. The heavy steel contraption he first invented nearly knocked him on the ground and covered his torso with bruises. So he switched to aluminum, and, four prototypes later, had a system that worked.

He called it the ChestMaster 5000. Now, what began as a rudimentary 18-kilogram metal cage worn over the chest is a lightweight, battery-powered pulsating vest that helps loosen mucus to make breathing easier. If produced, it could also be sold at half the cost of similar devices that leave users tethered to bulky power sources and can come with a $20,000 price tag, not always covered by health-care plans.

A diagnosis of cystic fibrosis used to be considered a death sentence – those born with it in 1960 were not expected to make it to kindergarten. Today, new drug therapies and treatments have helped sufferers live into their 40s and beyond.

Mr. DeVlieger’s family would eventually sink about $250,000 into his project, which is now in the hands of a Victoria, B.C.-based company that specializes in commercializing medical devices. Mr. DeVlieger believes his contraption, after years of tinkering in his father’s workshop (and the financial backing of of his uncle, an Edmonton architect), has helped him beat down the debilitating illness, and may be able to assist thousands more sufferers to have a better quality of life.

“I’m the kind of guy if someone says I can’t do, I say, I’m going to do it,” said Mr. DeVlieger from his home in Taber, Alta., an agricultural community of 8,100 about 270 kilometres southeast of Calgary. On top of becoming a commercial helicopter pilot, Mr. DeVlieger runs five kilometres daily, hits the slopes in the winter, has conquered the Boston marathon and is busy raising two young children with his wife.

When Mr. DeVlieger first started work on his device, similar products, known as “high-frequency chest wall oscillation vests,” were still in their infancy. While research began on them in the 1980s, licences for use by Health Canada didn’t come until recently. Electromed Inc.’s Smartvest Airway Clearance System got the green light here in 2006 and Hill-Rom’s Vest System, the original HFCWO, received its licence in Canada in 2010.

“It’s quite impressive to see somebody who is living with CF take matters into his own hands and develop a technology that not only helps himself, but others like him and others to come,” said Ken Chan, vice-president of advocacy, research and health care with Cystic Fibrosis Canada, which is not involved with the project.

Mr. DeVlieger’s concept landed at the University of Alberta in Edmonton in 2009, where specialists ran a clinical trial. It was deemed safe, but the one-day test wasn’t enough to determine efficacy.

Still, Neil Brown, who is a professor emeritus at the university and medical director at the Garneau Lung Laboratory, found the concept intriguing. The clunky, uncomfortable device needed work, but unlike other gadgets, this one didn’t compress the chest wall and in turn the lungs, and would be cheaper.

“There is potential for a niche market,” Dr. Brown said.

StarFish Medical, of Victoria, agrees. When it got on board in 2010, funding flowed in, including $80,000 from the federal government and $15,000 from the province.

Mark Drlik, a StarFish engineer and ChestMaster’s project manager, said he has taken “backyard ingenuity” and moved it to the alpha-prototype level, now just one year away from production. Mr. DeVlieger is the guinea pig with the latest design, a sleek 4.5-kilogram vest, designed to accommodate the male or female anatomy and use rechargeable batteries to focus percussive force on eight pressure points.

“This is not like a normal client,” Mr. Drlik said. “He saw a need and went after it.”

Today, on his 31st birthday, Mr. DeVlieger looks healthy. But he has the raspy voice and cough of a long-time smoker, and he has serious problems with his liver and spleen. After working for the oil industry flying helicopters in northern Alberta, he got too sick seven years ago and had to give up his pilot’s licence. He’s been on permanent disability ever since, and now dedicates much of his day to physiotherapy, sleeping and taking his medication, including up to 50 pills daily. His lung volume is 68 to 74 per cent that of a healthy person.

He’s focused now on keeping himself healthy and enjoying his family.

“I might have five years left,” he said. “I might have 10. I might have 20, but I choose to live my life.”

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