Cochrane resident Jenna Dillon and her son, Seamus, are raising money for cystic fibrosis throughout the month of May, which is Cystic Fibrosis Awareness Month.
The cause is a recent passion for the Dillons as the newest member of their family, Georgia, was diagnosed with the genetic disease soon after her birth. Thanks to newborn screening done through the Newborn Metabolic Screening Program with Alberta Health Services, Georgia was diagnosed within a mere two weeks.
“With the new screening, it added years onto her life. They put her on medicine as soon as they could, it was very fast,” Jenna said.
The news of their daughter’s disease came as a shock to the Dillon family.
“Both of the parents have to be carriers of the gene to have it … we didn’t know we were both carries so we were blindsided by it. We had no idea,” Jenna said.
According to Cystic Fibrosis Canada, the disease causes various effects on the body, but mainly affects the digestive system and lungs. It is estimated that one in every 3,600 children born in Canada has cystic fibrosis.
Jenna explained that Georgia must take enzymes in order to be able to digest her food as she “has a problem with malabsorption.” Because she was unable to digest her food, Georgia was losing weight and “at one point was even dehydrated” even though she was eating “about three times more than a regular baby would”.
“Now she’s on a special high-fat formula that is already kind of broken down so then her body can absorb it. And she also takes enzymes every time she eats, and she’ll have to do that for the rest of her life,” Jenna explained.
“We’re learning every day about cystic fibrosis – we’re going to the clinic in Calgary at the Alberta Children’s Hospital every two weeks right now,” Jenna said.
Jenna admits that before Georgia was born, she didn’t know many details about cystic fibrosis. She explained the clinic has been great at calming her fears by not letting her jump to conclusions about her daughter’s disease.
“They help you stay in the moment, and learn about her right now. And they help me enjoy my baby,” Jenna explained.
Jenna will be participating in the Carstar Walk to Make Cystic Fibrosis History to raise money for “innovative research to help Cystic Fibrosis Canada conduct research and provide care.
The Calgary Chapter of Cystic Fibrosis Canada will be hosting the three-kilometre walk in the South Glenmore Park on May 29.
“All of the money from the walk goes to the Cystic Fibrosis Foundation and some of that money goes to clinics at the Alberta Children’s Hospital so it will help with some of the costs of the disease and everything that they have to do. It also helps with some families that can’t afford the medicine,” Jenna explained.
Seamus, who is seven years old, will also be on his mom’s team for the walk. He is raising his pledge money by hosting a weekly lemonade stand throughout various communities within Cochrane.
“He’s doing a great job – he loves his little sister,” Jenna said.
So far, Jenna has raised $3,000 and Seamus has raised $145 for their team, Georgie Porgie. The two are still accepting donations but Jenna said she does not want to compete with Fort McMurray relief fundraisers as they are in greater need right now.
“My goal was $500 – I didn’t know how much money I could even manage to raise, so I’m pretty proud of what we’ve done,” Jenna said.
The Amaryllis Yoga Studio also held a Sweat for Cystic Fibrosis event on April 2 with the proceeds going toward the Dillons’ cause. That day the studio and its customers raised $1,300, which is part of Jenna’s $3,000 raised.
Another local family will be participating in the walk as well – Chantal, Al, Nash and Audrey Chapin are selling firewood in Cochrane to fundraise for the pledge money. Nash, who is four years old, also has cystic fibrosis.
A goal for Jenna is to hold a Cystic Fibrosis Princess Ball - a fundraising event held in February throughout Cystic Fibrosis Canada’s various Chapters. The Calgary Chapter will be hosting a Princess Ball at Hotel Arts on Feb. 19, 2017.
“The ball has all of the Disney princesses and little girls go to it. They have a night out, and they get to dress up and have a night out as princesses,” Jenna said.
For more information about the Carstar Walk to Make Cystic Fibrosis History or to make a donation, visit cysticfibrosis.ca/walk/find-a-walk-location and choose the South Glenmore Park location. Cochrane residents are asked to keep an eye out in the community for Seamus’ lemonade stand on Sundays.
To contact the Chapins about purchasing a wheelbarrow full of firewood for $10, email [email protected].
