A Grand Forks mother is promoting awareness of Cystic Fibrosis (CF) on behalf of her afflicted son.
Over 4,600 Canadians live with CF, a genetic disease that causes chronic lung infections among sufferers, most of whom are children, according to Cystic Fibrosis Canada. Five-year-old Bayne Krause is one of them.
Popular misconceptions about the disease are a constant source of frustration for parents like Bayne’s mom, Marianne.
On the one hand, Marianne says people commonly mistake Bayne’s persistent coughing and sweating — the hallmarks of CF — for COVID-symptoms. Bayne does not have COVID, nor is he infectious to others, she told The Gazette.
“My son coughs a lot because he needs to clear his lungs. He is not contagious,” she explained.
On the other hand, she said that people frequently take issue with her vigilance around Bayne’s health. Unlike most five-year-olds, Bayne has to wear a face mask. And he relies on other people not only to wear their face masks, but also to maintain social distancing around him — even though he is almost irresistibly cute.
Kids like Bayne can’t risk getting sick, but it happens. Marianne said it’s touch and go when it does, which is why she said Bayne was rushed to Trail Hospital when he came down with a cold last June. Bayne doesn’t need a fever on top of his condition: His lungs are congested at the best of times, just as his constant sweating leaves him perennially at risk of dehydration.
Most people’s lives don’t revolve around these hard truths, so Bayne literally wears them on his chest.
“I have Cystic Fibrosis,” his T-shirt reads, “Help keep me healthy — please social distance.”
Bayne and his family have gone to great lengths to keep him safe. He hasn’t attended school since the pandemic, Marianne said.
Marianne is asking people who meet Bayne to please respect her and step-dad Charlie’s wishes. Understand that they are taking all the necessary precautions to safeguard his health.
Bayne likes playing disc golf. He likes playing games on his tablet. He likes doing all the things you’d expect most five-year-olds would enjoy. But he needs to take all necessary precautions to stay safe; so that, when the pandemic lifts, he can go back to living his best life.
May is Cystic Fibrosis Month. Marianne and Charlie are asking people to consider wearing the signifying purple ribbon on May 26.
For more information about CF, please consult Cystic Fibrosis Canada’s website at cysticfibrosis.ca.