Brothers Andre and Josh sit side by side on the couch after school playing video games like most kids their age.
The obvious difference, however, is that these boys play while the gentle hum of a bronchodilator fills the room as they inhale the necessary medication.
"It's draining," explains mom Sasha Haughian.
Nine-year-old Andre and seven-year-old Josh live with cystic fibrosis (CF).
The Tottenham mom says that as an infant, Andre was closely monitored long before his diagnosis because he wasn't developing at the conventional rate.
"He wasn't sitting up or walking," she says physiotherapists worked with a very weak Andre as a baby to help him do simple things, like rollover.
She says that he wasn't gaining weight as he should have, raising concerns. "He was eating and eating and eating and not absorbing any of the fats that he was consuming."
By the age of four, Andre was diagnosed with CF, a fatal genetic disease that has no cure and affects the digestive system and lungs.
His mom, Sasha, says because Andre wasn't diagnosed for so long, he suffered.
"He was hospitalized numerous times," she recounts. "His lung had collapsed at one point. He suffered some permanent lung damage from these chronic lung infections he hadn't been treated for over the years. So we were struggling a lot."
Sasha Haughian stands outside her Tottenham home with her three children.
Sasha admits the disease does more than affect her sons; it has taken its toll on the entire family.
"I don't sleep unless they are sleeping peacefully." She says the family heads down to SickKids in Toronto frequently. "Instead of getting up and going to school in the morning, we're heading to the hospital. That's not normal for any child."
Two years ago, Sasha says things drastically changed for Andre. He was randomly selected for a drug trial called Symdeko.
"Within a week of starting this drug, he completely changed. His chronic cough completely went away. He's been able to live his life like any kid his age."
Unfortunately, relief for the family was short-lived as their younger son, Josh, began developing more prevalent symptoms of CF.
(L to R) Andre, 9, and his brother Josh, 7, inhale medicine to help with their chronic coughing caused by Cystic Fibrosis. (Craig Momney/CTV News)
"It's a progressive disease, and you can see it starting to take its toll," she says Josh was diagnosed at two, but over the last year, he started having issues.
"It's annoying. It's really annoying," Josh says quietly about his chronic coughing that keeps him up nights.
Now Sasha is on a mission to have both her children, not just Andre, on the new drug that she calls life-altering.
"I don't know if words can describe how much this drug has changed his life. It is amazing."
The drug is called Orkambi. It can cost up to $250,000 per year and isn't covered under any provincial drug plans.
Simcoe-Grey MPP Jim Wilson recently raised the issue at Queen's Park, declaring that the prescription criteria for the drug should be up to doctors and not bureaucrats.
Health Minister Christine Elliott told CTV News, "In Ontario, Orkambi is considered for funding on an exceptional case-by-case basis for pediatric cystic fibrosis patients who are rapidly declining despite appropriate treatment." She went on to state, "Specifically, this applies to patients aged six to 17 years old with at least a 20 percent decrease in lung function in the last six months that has been sustained for at least six weeks despite appropriate treatment."
Sasha wants the rules to change. "I would love Josh to have Orkambi for Christmas. That would be just magical. So he can grow up and stay out of the hospital."
She and her husband will meet with the Ministry of Health in Toronto on Wednesday. She hopes to have the prescription standards for the drug removed so both her sons can live a healthier life.
"It's a game of trying to stay as healthy as you can for as long as you can until a better drug comes along - instead of just treating this disease with band-aid medications."
- With files from CTV's Craig Momney
