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Cystic Fibrosis ‘New Normal’ for Chipman Family
Cystic Fibrosis ‘New Normal’ for Chipman Family
Michelle Pinon - News Advertiser
Johnnie Lesoway was only 10 days old when Jocelyn and her husband received a phone call from their family physician that Johnnie’s newborn screening flagged positive for Cystic Fibrosis (CF).
That phone call came on Dec. 22, 2022. They were asked to head to the Stollery Children’s Hospital that afternoon to meet with clinic staff before they closed for Christmas holidays. “What a shock for everyone! We didn’t know anything about CF, except that it was scary…We had no idea that we had the CF gene in either of our families.
I remember arriving to the CF clinic, like it was a dream. The clinic staff admiring our sweet new baby boy. They prepared us for the realities of raising a child with CF, and assured us that thanks to advancements in modern medicine we will be saving money for Johnnie’s college fund, not a funeral.”
They were informed about a new breakthrough medication that has been changing the lives of those affected by CF, and that Johnnie would qualify for it when he turns two-years-old. He was prescribed digestive enzymes to be given with feeds due to pancreatic insufficiency. Jocelyn explained that, “Without enzymes, his body won’t absorb nutrients and digest properly. This will likely be a lifelong medication.”
Additionally, Jocelyn said chest physiotherapy was added to their daily regime when Johnnie was two-months-old. “This consists of two, 20-minute sessions of chest percussions a day. It is performed to break up mucus in his lungs.”
She noted that, “Once there is any sign of illness in our house, we increase the treatments to four times daily. The thick mucus in his lungs can keep germs lingering around longer than people without CF. Exercise is also important to keeping Johnnie’s lungs healthy.”
While young Johnnie doesn’t let CF get in his way of living, Jocelyn admits, “CF has become the new normal in our lives. Being a parent to a child with CF comes with a lot of mixed emotions. It’s like a dance between gratitude and grief. Grief for the lives taken by this tragic disease. Gratitude for those who have fought in the past and those who continue to fight for a cure.
There is so much more research and work to do. Fundraising is such an important aspect of the CF community; so is awareness. They say it takes a village and I intend to grow Johnnie’s Village as much as I can.”
Jocelyn and her family participated in the CF walk last spring and they are raising money once again this year with a goal of $5,000 with proceeds going to the CF Chapter of Edmonton and Northern Alberta.
