LIVING WITH CF
Family says pandemic a picture of what life with cystic fibrosis is like
Long before the COVID-19 pandemic hit Saskatchewan, Twyla Mcdougall was used to buying masks and hand sanitizer while avoiding anyone with a cough.
She didn’t do this because she was afraid of catching a cold, but because she was afraid her daughter would catch one.
Mcdougall and her husband Chris were just settling into parenthood after the birth of Emmanuella — their first child — when 22 days later they got a phone call. A routine blood test done on all newborns revealed Emmanuella may have cystic fibrosis (CF).
Cystic fibrosis is a genetic disease that mainly affects the lungs and digestive system. There is no cure for the fatal disease.
“When we got the phone call saying that she might have it, it kind of felt like we were overwhelmed with a bunch of dark clouds.
“I didn’t know much about CF at that time,” said Mcdougall. What she did know was that people with the disease often died young and required a lot of medical care.
At their first appointment with a cystic fibrosis health-care team, Mcdougall said she was told about the realities her daughter would face living with the disease, but that there was hope in new medicines and treatments being developed. On average in Canada, people with the disease live to be 52 years old.
“We still knew that she was going to have some really tough challenges in life and things were not going to be easy, but we had hope,” she said. “We’re so thankful for that cystic fibrosis team that we met with.”
In the decade since then, the Mcdougalls have learned what it practically looks like to care for their daughter. Emmanuella, now 10, has to take medications at every meal. Her body struggles to absorb nutrients from her food and she has to take in an extra 1,000 calories per day through a feeding tube in her stomach.
Mcdougall said the whole family — including two other daughters who are ages eight and six — take extra precautions to make sure they are not bringing any sickness home with them as Emmanuella is more vulnerable to even the common cold.
“The isolation and the washing hands and the coughing into your arm and the staying home when you’re sick — these are things that we’ve been thinking about for 10 years,” said Mcdougall.
“Wearing a mask is not a new thing. Having hand sanitizer in her jacket pocket is not a new thing. That’s life with CF.”
Now Mcdougall and her husband help raise awareness of the disease with Cystic Fibrosis Canada.
The organization had planned on hosting its annual Walk to Make Cystic Fibrosis History fundraiser on Sunday, but with the COVID -19 pandemic, that walk has moved to a virtual format.
Mcdougall said even though the event is virtual this year, even more people than last year have signed up to participate and she is pleased to see more people learning about the disease.
To register for the event or to donate visit cysticfibrosis.ca/walk.
Wearing a mask is not a new thing. Having hand sanitizer in her jacket pocket is not a new thing ...