Macrina Perron is the proud mom of two busy youngsters living with cystic fibrosis.
Eighteen years ago, Macrina Perron moved to North Bay to attend Nipissing University. She signed up for Shinerama as a way to meet people, and raise money for cystic fibrosis research.
Never in her wildest dreams did she think she would be back at Nipissing talking to frosh leaders as the proud mother of two active youngsters living with cystic fibrosis.
“If someone would have told me 18 years ago when I was getting ready to wash cars that I would be here today speaking about my own personal life experiences with CF, I would have thought that was nuts, but here I am.”
Perron’s son Brayden is 12-years-old, and her daughter Keira is eight-years-old.
“Back then I knew someone who had CF so I made a connection to the ‘why’ of what we were doing,” said Perron.
“Brayden was actually diagnosed after my daughter. In 2008 the province added cystic fibrosis to the list of genetic disorders they test for in the newborn screening program. Because Brayden was born in 2006, he wasn’t tested. When my daughter was born in 2009, she was diagnosed right away. We were at CHEO (Children’s Hospital of Eastern Ontario) within a couple of weeks and were being treated shortly after.”
Because Keira tested positive, it meant both Macrina and her husband were carriers of the CF gene. Brayden was tested, but by then they already knew what the results would show.
“He’d had a series of lung complications in the first few years of his life, hospitalizations, and pneumonia. He was diagnosed with allergies and asthma which we obviously now know was more than that.”
Life in her household changed dramatically.
“We do about an hour of treatments a day. In the beginning, it was hand percussions so hands on chest physiotherapy 20 minutes a day, the pounding to loosen up the mucus, huffing afterward to try and clear the mucus. They take up to 30 pills a day, and they are at CHEO every 8 to 12 weeks,” explained Perron.
It was recently determined that her son needed surgery for a gastrostomy tube to help with feeding.
Perrons explains that the average CF patient needs to eat about three times as much as the average person because of the lack of nutrient absorption.
“One of the big complications with CF is that patients don’t absorb nutrients properly which is why they take oral digestive enzymes, but sometimes that’s just not enough. He’s 12 years old, he’s really tiny and he’s really struggling to maintain weight. So he’s having a tube placed so he can receive nutrients overnight, about 1,000 calories overnight, and continue to eat normally during the day to hopefully put some weight on his bones.”
When the children aren’t doing everything that is required to try and stay healthy, they are busy doing “kid” things.
“My son is a hockey player, he’s a goalie. So the surgery will affect his hockey season, but we are assured he will be back at it, probably in November. He’s super active. My daughter is a figure skater. She plays softball in the summer. To look at them, you would never in a million years know there is anything wrong with them, other than they’re a little scrawny. Behind closed doors, what it takes to keep them that healthy is cumbersome and sometimes exhausting, but it’s because of events like this and research, and advocacy that kids are living longer. They’re becoming adults. We, for the first time in Canadian history, are having to worry about geriatric care with CF patients.”
Perron not only hopes, she believes that a cure will be found in their lifetime.
“I do. I recently became a regional advocate with Cystic Fibrosis Canada government relations. There are some really, really exciting things coming down the line. There are a couple medications that are disease modifiers, which means it changes the disease at a cellular level,” said Perron.
The problem with the medications, which Perron says has the potential to change lives, is the cost.
“They’re astronomically expensive. They’re about $300,00 to $350,000 a year per child. So we’re working really hard at Cystic Fibrosis Canada in aligning ourselves with the province and the country as well. Health Canada is on board with a lot of the medications, but getting the province on board has proven to be very tricky because of the price.”
Paige Shemilt, is the Cystic Fibrosis Canada-North Bay Chapter President.
“My fiance has cystic fibrosis. He is 27 years old, and is doing fabulous. He’s a paramedic which is something he’d always dreamed of doing but was told he’d never be able to do. Now he’s working and loving every minute of it here,” said Shemilt.
“Because Shinerama has been around for so many years, we’ve adopted it to be part of our yearly events. It’s really important to us too, because it’s bringing in a whole new crowd of people. It’s bringing in all of these young students, and they’re helping spread awareness. They’re extremely motivated to help us with the cause.”
Shemilt says the average age of survival is 53.3 years.
“When my fiance was born doctors said he likely wouldn’t see 12. We have 42 clinics across Canada so money raised also helps support these clinics so patients have somewhere else to go and get the medical help they need.”
Nipissing University students will be working to raise money right across the Nipissing District Saturday, by washing cars and carrying groceries.
Last Sunday frosh leaders had the pleasure of washing a helicopter, to get in some practice ahead of their big event.
Nicolai MacKenzie and Sarah Carlton members of Nipissing University Student Union were in the helicopter when it landed behind the university. They stepped out wearing superhero attire.
“We’re the superheroes who are out to raise money for Cystic Fibrosis Canada. It’s a great fundraising event.”
Carlton says it was a way to get frosh leaders pumped for the event.
“I think it was a great way for people to see what we’re doing at Shinerama. It’s a good way to get the frosh leaders and the community hyped up to support the event.”
Xander Winter who also is a member of the student union says it is important to get students involved.
“CF is a disease that a lot of people don’t hear about, when realistically 1 in 3,600 Canadians are born with it every year. I think it’s really important to open their eyes to what CF is,” said Winter.
“This summer we had a ball tournament that raised over $2,600. Our ultimate goal is to raise $15,000. The last couple of years we’ve raised around $12,000.”
As a parent, Perron says it’s important to continue to educate this younger generation.
“These guy’s are the future voice. They’re going to spend eight or ten hours washing cars. It’s going to be exhausting, but living with CF is also exhausting.”
