One breath at a time

Ariane Guay is an energetic and athletic 10-year old who loves swimming, diving and rollerblading  – the complete opposite of her 8-year old sister, Alexandra, who loves makeup, dancing and putting on shows that emulate her favourite Youtube videos. Ariane is also different from her sister in that she has Cystic Fibrosis (CF), an inherited condition that causes the body to produce mucus that’s extremely thick and sticky, mostly affecting her lungs and pancreas. But while managing her condition is part of her daily life, it doesn’t stop her from living life to the fullest.

Uncovering the diagnosis

Annie Laroche, Ariane’s mother, says her daughter exhibited a number of symptoms that didn’t ever seem to go away as a toddler. “She would have a lot of respiratory symptoms as well as digestive problems, and at the time we thought it may be a lactose intolerance and asthma,” she explains. “She would vomit often, but then a lot of new symptoms would surface. We saw our pediatrician, who referred us to a lung specialist and recommended that we been seen at the Children’s by Dr. Anne-Marie Canakis, a pediatric respirologist.”

It was the end of May 2008. Annie remembers taking Ariane to see Dr. Canakis, who recommended a sweat test be performed to measure the level of chloride (a chemical in salt) in a sample of her daughter’s sweat. If the levels were high, a diagnosis of Cystic Fibrosis was possible. “The test was at 10:00 a.m. and I had just gotten home from the hospital,” says Annie. “I got a call telling us to come back, that they needed to perform more tests and speak to us. And that’s when we found out she had CF.”

Learning to manage a new illness

While Annie says the news was very difficult to take at first, what followed was a week-long intensive course from the Cystic Fibrosis team on how the disease worked and how to manage it. “To help families manage their child’s condition, they meet with their doctor and a nurse, a physiotherapist and a nutritionist to teach them about treatments and techniques that they will be using daily,” explains Debbie Fertuck, one of two nurse clinicians in Respiratory Medicine at the Children’s. Annie says that first week was not only reassuring to her as a parent, but made her feel like this was something she and her family could manage with the hospital staff together.

“As a team, we try to stress that CF patients can do anything other children can do. They’ll have a normal childhood, just with a few more hospital visits in order to monitor their condition,” says Debbie.

Supporting Ariane together

“Everyone on the team: from Dr. Larry Lands, Dr. Adam Shapiro and Dr. David Zielinski, to Ariane’s nurse, Sophie, to Nancy, her physiotherapist, have become like part of our extended family now,” says Annie. “Sophie has built a trusting relationship with Ariane through really taking the time to connect with her, Nancy calls her ‘Peanut’…they all are just such a wonderful team.”

Despite a couple of hospitalizations over the years, Ariane’s condition has remained very stable. As she’s gotten older, she’s been able to independently manage her condition by taking her own medication and monitoring her food intake, even while at school. “She likes having more input and control over how she will take her medication, and we support her in that,” says Annie. Being naturally athletic, Ariane enjoys keeping active as well, which also helps in managing her CF symptoms. “She looks forward to gym class in school and loves trying new things, she’s our Evel Knievel who loves an adrenaline rush!” says her mom.  And while she hasn’t quite decided what she wants to be when she grows up just yet, she looks forward to finishing up grade 6 next year and starting high school at École Louise-Trichet with a group of her friends from the neighborhood. “How can we say thank you enough?” says Annie. “We’re really thankful to have the support of the team at the Children’s.”