Every morning, seven-year-old Carter Strange yawns, stretches, and gets out of bed. He walks to the kitchen and takes a handful of pills — some are standard multivitamins, others are things like digestive enzymes that help keep him alive. He takes 40 to 50 pills daily, about 12,000 pills a year.
Carter suffers from cystic fibrosis, a non-contagious genetic disease that is passed to a child at birth by two parents who both carry a defective gene but do not have any symptoms themselves. The disease causes the body to abnormally lose sodium and sticky mucus to build up in places like the lungs and pancreas resulting in lung infections and digestive problems. About 3,500 Canadians are currently afflicted.
“When things are good, if you saw Carter you’d never know,” said David Strange, Carter’s father.
“Even when he’s at 50 per cent lung function it’s go go, I mean that’s one of the benefits of youth.”
Eventually, though, as his lungs become more damaged he’ll be more challenged in terms of breathing and activity and could need a lung transplant down the road, said Strange.
That’s why Strange and his wife Heather are thankful that they have the services of the BC Children’s Hospital (BCC) just a ferry ride away.
“It’s funny — about a year before Carter was diagnosed, we were on a trip to Vancouver and we’re driving down the road into downtown Vancouver and we drive by the BC Children’s. And, you know, we drive by and we had that moment where you go ‘let’s hope that we never have to go there.’ A year later we were there.”
Before that, he had been really sick the first couple years of his life. But doctors up island, where the family lived at Cowichan Lake, were unable to accurately diagnose the condition. It wasn’t until moving to Sooke in 2005 that Dr. Saunders from the Sooke Evergreen Medical Centre, who had previously spent time working in a cystic fibrosis centre, linked the pieces together. Carter had an initial test done locally, and BCC confirmed the results.
Strange said although the family hasn’t spent a lot of physical time at the Vancouver hospital, the impact they have had on Carter’s life has been “huge.”
“The expertise and research that goes on there directly impacts him.”
Most of the interaction that Carter has with BCC, however, is indirect. They work with a team at the cystic fibrosis team at Victoria General Hospital sharing knowledge and providing support. Usually only for more advanced tests and diagnostic services is a trip to BCC necessary, where Strange said it’s not just the facility that’s top notch.
“Their business is children, right, so just the whole flavour of the building, the mannerisms of not just the doctors and nurses but the technicians and the radiologists,” he said.
“They have years of experience working with kids and that’s always good because we’ve had to go to children’s for some pretty serious tests. Serious scans and pulmonary tests that when you go there you’re apprehensive anyways, but you feel at ease right away.” Part of that comfort also comes from family education days that the hospital hosts. Experts explain in detail specifics about the disease and treatments and also answer any questions that come up.
There is no known cure for cystic fibrosis, only treatments. Besides pills, Carter also performs respiratory therapy where he inhales medications three to five times a day, and does some physiotherapy exercises to loosen up the buildup in his lungs. A few decades ago, it was rare to see someone with the disease live past toddlerhood. Now, the life expectancy is around 40 years.
Although there is only a 25 per cent chance that a subsequent child would contract cystic fibrosis, there is also a 50 per cent possibility that it could carry the defective gene that causes the disease. That, combined with other challenging familial commitments, made the couple decide not to try for a second.
Support from the town has been “unbelievable”, said Strange. People donated money to help the family purchase a generator for the house to power medical and therapy-related machines. Journey and Poirier Elementary collectively have raised about $16,000 for cystic fibrosis research, a large portion of that funding the clinic at Victoria General.
“No matter the disease or the cause, this community always seems to come up with the money and help and assistance, and we’ve certainly been the beneficiary of that for sure.”
Even the environment has seemingly lent a helping hand — Strange said Sooke is probably one of the best climates for Carter to live in because of the good rural air quality and the salt content in the air from being near the ocean.