THUNDER BAY - Carla Norman doesn’t know what it’s like to not live with a disease that can make breathing a difficult and trying experience.
“People say they can’t live without electricity; I literally cannot live without electricity because of my breathing treatments,” Norman said.
At only three months old, Norman was diagnosed with Cystic Fibrosis, a genetic disease that can cause difficulty breathing and frequent lung infections.
“I’ve never lived life without CF, so basically when I try to compare my life to my friends, it’s just little things,” she said. “I can’t go out at a moment’s notice if I don’t have my pills or my puffer. I have combined three hours of breathing treatments every day.”
Now 36-years-old, Norman works to raise money and awareness for finding a cure for the disease she has lived with all her life. On Sunday, Norman, along with more than 35 others, participated in the annual Walk to Make Cystic Fibrosis History.
Karen Danelisky, walk coordinator, said this year the goal is to raise $7,500 for Cystic Fibrosis research and by the Saturday before the walk, the Thunder Bay chapter of Cystic Fibrosis Canada already raised more than $3,500.
“Here in Thunder Bay, we’ve probably raised $50,000 in last five years,” Danelisky said.
Danelisky said the walk is meant to raise awareness about CF and raise important research money that is used in research hospitals in Toronto.
“Canada is one of the leading researchers in CF,” she said. “Since the 1970s when the average age of a child with CF was 4-years of age, we are now up to a point where the average age of an individual with CF is 51 years. We’ve made some great strides, but we’re not there yet and we need to get there.”
Paula Trudell has participated in the walk for the past 20 years and it was the passion people showed from the beginning that made her want to get involved.
“It touched my heart to see everyone that was supporting the cause, which is a terrific cause,” she said. “Hopefully one day we will find a cure and we won’t have to have these walks.”
Trudell has worked with Norman in the past and seeing how far she has come shows just how important research is for finding treatments for CF so people like Norman can have a long and happy life.
“We’ve made a lot of progress and it’s important to come out and support the cause and raise awareness,” Trudell said.
For Norman, reaching out for donations and support does help raise awareness, but she joked that it is a bit of a selfish charity from her perspective.
“I collect donations on Facebook and in person, and every time someone gives me a donation it’s awesome, because, it’s sort of a selfish charity for me, but it does help me live longer,” she said.
And while Norman can find humour in the little things in her life that are different because of her diagnosis or how she can be a little selfish when asking for donations, she is all too aware of the cost of CF.
“I have lost a lot of people,” she said. “I just try to focus on the positive. Because of all these people and all these treatments, I have lived to 36. I have friends who are in their 40s and close to 50, which is amazing. So all the new drugs and treatments will help people live longer and hopefully not lose as many people in the future.”
Treatments and medications have come a long way since Norman was first diagnosed and many people are surprised to learn she has CF because it is commonly thought of as a children’s disease. So when people see Norman at 36-years-old and living a happy life, it can be really inspiring, even if she doesn’t always see it that way.
“Whenever people tell me that I’m a role model or an inspiration, it just blows mind,” Norman said. “I don’t do this to do that. I just do it to, you know, live longer.”
