CORNER BROOK — Luke Sceviour was 11 days old when he was diagnosed with the fatal genetic disease, cystic fibrosis.
Now at six years old, one of his biggest concerns is playing with his older siblings Caleb and Abigail.
“No one would ever know he has an illness — and that’s the way we like it,” said his dad Kent Sceviour.
In most ways, Luke is just like every other kid who started Grade 1 this week.
Unlike most, he has a daily routine of exercises and medicine that allows him to be a kid.
Cystic fibrosis causes severe respiratory problems from a build-up of thick mucus on the lungs. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food.
To help combat the adverse affects of the illness, Luke’s parents, Kent and Joclyn, have developed a routine to control his illness.
“He doesn’t know any other lifestyle,” said Sceviour. “It’s a pattern of how he lives his life.”
Twice daily, Luke and his parents preform chest physiotherapy to loosen mucus on his lungs. They manually preform the exercises by using a clapping action for 15 minutes.
Luke also takes medication, vitamins, and digestive enzymes at every meal. For those with an advanced forms of the disease, double-lung and liver transplants could become an option.
There are certain restrictions on what Luke can do, but he rarely questions the lifestyle he is accustomed to, Sceviour said.
Although the family is vigilant about air quality and places where there is smoke, they try to let Luke lead a typical life.
“But we don’t shelter him,” Sceviour said. “We go where we need to go and do things we need to do.”
He said the family is lucky that Luke has responded well to treatment, and has not been hospitalized since he was seven months old.
Cystic fibrosis is caused when a child inherits defective copies of a gene from each parent.
The Sceviours knew about the illness before Luke was born, but did not think to be tested for it.
“It’s not one of the (diseases) you look for,” said Sceviour.
To date, there is no cure for cystic fibrosis.
Every week in Canada two children are diagnosed, and one person dies from the disease. In 2010, half of those who died from cystic fibrosis were younger then 26 years old, said Cystic Fibrosis Canada.
However, life expectancy of those with the illness has dramatically increased from where it was a generation ago. Today, half of all Canadians with the disease are expected to live into their 40s and beyond.
“If it was me (doctors) said I wouldn’t live to Kindergarten,” said Sceviour. “(Doctors) now are talking about Luke, after he goes to university.”
One of the organization’s largest fundraising campaigns Shinerama, happens every September to support research for a cure.
Shinerama was started in the 1960s by raising money from shoe shining activities. The fundraiser has now expanded across the country and is usually built into post-secondary orientation events.
Shine Day will take place Friday from 11 a.m. — 4 p.m. at six locations within the city. They include, Shoppers Drug Mart in the Millbrook Mall, Colemans on O’Connell Drive, Zellers, Wal-Mart, Grenfell Campus, Memorial University of Newfoundland and Western Memorial Regional Hospital.
Residents are asked to drop by to get their shoes shined. There will also be a barbecue, face painting and musical entertainment.
Organizer Amy Cull said the 2012 Shine Day fundraising goal is $8,000, was just shy of last year’s total.