Mother of daughter with cystic fibrosis: ‘Have grace’
GRAND RAPIDS, Mich. (WOOD) — May is Cystic Fibrosis Awareness Month.
Melissa Kann, a mother of a child with CF, explained it as a “progressive, genetic disease” that produces a thick, sticky mucus making breathing difficult and digestive issues common.
“To date, there is no cure but it impacts 40,000 adults and children living in the U.S.,” said Kann.
She said her daughter’s life is much different now than it was for her first 12 years.
“We knew Annabelle had CF when she was born. We had genetic testing done because we knew it ran in the family and we were carriers. So, we knew, or we thought we knew, that to expect coming into it,” Kann explained.
For the first years of her life, Kann said Annabelle took care of the disease with routines like taking enzymes, doing airway clearance and inhaled medications. Then in 2021, Annabelle started a new modulator, or drug, that attacks the underlying protein of the CFTR (Cystic fibrosis transmembrane conductance regulator), helping the gene and protein regulate themselves. Kann said it “completely changed her life.”
“After starting this medication in 2021, she stopped coughing within days, she hasn’t … had a hospital stay since 2020, but she’s really able to do all of those activities that you would expect of an eighth grader,” Kann explained.
But she says 10% of the population isn’t able to take the drug, and that there still isn’t a cure for CF. For people with family and friends who have CF, Kann emphasized the importance of understanding.
“You have to have a little bit of grace, sometimes, if you know that they’re having a hard time, if they’re missing work, if they’re missing school. Just understanding that everything for them takes a little bit more energy, a little bit more time. They’re doing hours of treatments and taking many, many medications,” Kann said.
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