Couple takes son’s illness in stride

Three-year-old Jake Byers approached his mom with a sheepish look on his face.

“It doesn’t matter, Mom. It’s not a big deal,” he said before Lisa Byers even realized anything had happened.

Then she took a close look at her son. Jake’s face and limbs were covered in blue-ink scribble. It seemed that her busy little boy had turned his body into an art canvas.

The rescue procedure involved some nail-polish remover and a cotton ball. Then, Jake was off on his next adventure.

These are the moments that Lisa and her husband, Merv, relish in their youngest child. These times mean Jake is just like any other kid his age, even though he has one significant difference – he has cystic fibrosis (CF).

The condition results in the buildup of mucus in the lungs. This makes it difficult to clear bacteria, leading to infections and inflammation that damage the delicate lung tissue.

The current median age of survival of Canadians with CF is 37 years, according to the Canadian Cystic Fibrosis Foundation (CCFF).

Lisa and Merv are doing what they can to extend Jake’s odds and that of other people with CF. May is CF Awareness Month in Canada, and they are holding a fundraiser through their business, Perfect Tan, which has two locations in Abbotsford.

They are donating five per cent of all tanning and product revenues this month to CCFF.

As well, the family – also including daughter Mackenzie, 8, and Ben, 6 – will again participate in the Great Strides fundraising walk. This year, the event takes place Sunday, May 25 at Fleetwood Park in Surrey.

In 2007, the Byerses had 60 people accompanying them on the walk, and they collected $20,000 through pledges and through their business fundraiser.

This made them the top CCFF fundraisers in Canada.

So far this year, they’re up to $12,000 and are expecting 80 to 100 family, friends and co-workers to join their team.

Jake is one of five children across Canada who have been named “Super Striders” for the nation-wide walk. As such, his photo and story appear on pledge forms and the CCFF website.

Lisa said Jake is excited about the event.

“Jake plans to run the whole way, he said.”

Staying active is something the couple encourage with Jake – as do medical experts – and he has no trouble doing his part. He is constantly on the go – perhaps even more so than other children his age.

“From the moment he gets up, he does not stop,” Merv said.

The family have a trampoline in their backyard, and Jake bounces around every day for at least 15 minutes.

He is also an avid athlete, enjoying soccer, floor hockey and baseball. He perfects his skills – including a wicked windup pitch and a powerful slapshot – in a room downstairs that is entirely dedicated to such play when the weather is bad.

Merv said Jake’s energetic streak could be due to the two hours a day he spends having to sit still for the physiotherapy – called “percussion” – that clears the mucus from his lungs.

This is divided into two sessions a day – first thing in the morning and in the afternoon. Merv is the one who handles the task of “clapping” or “patting” the back for 25 minutes.

It’s a process that Merv has become expert at performing with precision, even though he sometimes has a restless youngster on his hands.

The percussion is preceded by a 20-minute process in which Jake uses an inhaler device to clear his airways.

The couple are meticulous about ensuring Jake receives his physiotherapy on schedule every day without fail. In the past, this has made it difficult for the couple to get out on their own.

However, last September, they purchased a special vest that can be strapped around Jake’s torso. The vest is hooked up to an air compressor and performs “high frequency chest compression” on its own.

The device is not available in Canada – the couple purchased it from Minneapolis – but Merv said it has been used with great success in the U.S. for the last 20 years.

However, the cost is prohibitive for many families, coming in at about $15,000. It is not covered by B.C.’s Medical Service Plan (MSP).

The device enables Merv and Lisa to leave Jake with his grandma, who was taught how to operate it.

“It’s good because, if we have to go away, [Lisa’s] mom doesn’t have to fight with Jake to do the physiotherapy and, with the vest, we know it’s being done right,” Merv said.

The couple have since been able to get away for a couple of mini vacations.

They see the device as a complement, not replacement, to their regular treatment. They would like to see it become available in Canada, with at least some of the cost covered either through the MSP or through fundraising.

Even better, they long for a day that the vests will no longer be needed at all. Funds raised from the Great Strides walk go towards research for a cure.

Helping the family with their endeavour is a six-year-old girl, Ceilidh Smith, who is in the same class as Lisa’s and Merv’s older son, Ben, at Auguston Elementary.

The budding artist has created a set of four greeting cards that she is selling for $10 a set, with half the proceeds going to the cause.

For more information about the cards or to make a donation to the walk, phone Lisa or Merv at 604-556-7373. More details are also available at the website cysticfibrosis.ca.