I remember the phone call like it was yesterday.
It was a Wednesday afternoon, and my newborn daughter had just fallen asleep on my chest.
I answered the call, but when the voice on the other end introduced herself as a geneticist from London Health Sciences Centre, I wished I hadn’t.
She asked if I recalled the newborn ‘heel prick’ test performed at Bluewater Health just three weeks before.
“Your daughter has screened positive for Cystic Fibrosis.”
My heart sank.
“This doesn’t necessarily mean she has the disease,” the geneticist explained. “But you’ll need to come to London right away.”
The next 24 hours were a nightmare of sweat tests, needles, and waiting.
But when we were told that our daughter was only a carrier of the disease — one of about 400,000 healthy Ontarians — we were overwhelmed with relief.
But not everyone is so fortunate.
In Canada, two children are diagnosed with Cystic Fibrosis each week, and one person will die as a result of the disease, which primarily affects the digestive system and lungs. It is the most common fatal genetic disease affecting Canadian children and young adults, and there is no cure.
For years, local families affecting by CF have been working to raise awareness. But the burden of organizing, fundraising, and recruiting volunteers — while caring for their own sick children — has taken its toll.
Last year, local mother and Bright’s Grove resident Tracy Hyde took the reigns as president of the Sarnia-Lambton Chapter of Cystic Fibrosis Canada. I came on board, along with Tara Bourque — a tireless advocate for CF awareness and organ donation – last fall. The 21-year-old Sarnia woman was diagnosed with CF at 14-months-old, and was the recipient of a double lung transplant three years ago.
May is Cystic Fibrosis Awareness Month, and the chapter’s Great Strides Walk — a 5 km and 10 km event beginning at the Sarnia Kinsmen Centre — will take place May 31.
The goal is to raise funds and awareness in Sarnia-Lambton for those living with CF, in hopes to find a cure or control.
At the end of the day, it’s the least we can do for the families that don’t get the good news.
For more information, contact [email protected] or visit www.cysticfibrosis.ca/greatstrides.
Tara Jeffrey is a wife, mother, volunteer, and freelance writer in St. Clair Township.