I tossed and turned — and worried — all night.
I kept checking on my 11-month-old son, Ryan, fast asleep in his crib. The day before, my tiny baby had been diagnosed with cystic fibrosis and I was afraid something awful was going to happen to him before morning.
Looking back, I realized Ryan was struggling for those first 11 months. He nursed well, but he was always starving. And he was very skinny — Ryan was almost a year old and weighed only 11 pounds.
I remember the day I got the call from the nurse saying that Ryan had CF. I was shocked and felt absolutely sick inside. After the diagnosis, doctors at our local CF clinic admitted Ryan to the hospital. He stayed there for almost a year and was fed by intravenous. My husband and I were heartbroken and overwhelmed. We couldn’t believe our son had an incurable fatal disease.
After finding out about Ryan’s frightening illness, the nurses and doctors connected us with Cystic Fibrosis Canada. We participated in our first Walk to Make Cystic Fibrosis History when Ryan was still in the hospital. We knew how important it was to raise as much money as we could for research.
Even though CF is genetic, we were hopeful that our next son Kyle wouldn’t have it. To say our hopes were dashed would be an understatement. The first test on Kyle was inconclusive, but the second test was positive. I don’t think I need to tell you how it felt to receive that news.
Our third child, Hannah, was tested as a newborn. She does not have CF. So when our youngest, Claire, was born we were optimistic that she’d be healthy too. My husband Gary was waiting for Kyle and Ryan outside their school when he received the call from our doctor with the news about Claire. I don’t know how he drove home that day because I knew as soon as he walked into the house. It was written all over his face. Claire had CF, too.
We just held each other for what felt like forever as the realization sunk in. Three children under 8 with CF. Three children whose futures were uncertain because of this devastating disease.
If you met my kids, you’d never guess that three of them live with severely damaged respiratory and digestive systems. Ryan, Kyle and Claire may look healthy, but they all have an “invisible” disease.
They have to wear special masks to break up the mucus in their airways two or three times a day, they do physiotherapy and breathing exercises. And, to digest their food, they must take enzyme pills with every single snack and meal.
Through it all though, my kids are very hopeful that a cure will be found. So, I’m hopeful too. They inspire me every single day.
Fifty years ago, most children with CF didn’t live long enough to go to kindergarten. Because of advancements in research thanks to generous donors, today it’s much more likely that my children will live into adulthood.
It’s still not guaranteed, however.
That’s why we need continued support, and why CF Canada should be the charity of choice for Canadians this holiday season. I’m sure more discoveries will help my kids and everyone living with CF — it’s just a matter of investing in research.