When my husband Luc and I walked into CHEO holding our two-month-old daughter Camille, we commented on how amazing it was that we’d never been there before. Our older daughter Janelle had never needed CHEO, at three years old she was healthy and thriving. Camille wasn’t, and we didn’t know why in that moment, but we saw first-hand how the team at CHEO quickly surrounds a family.
When an infant doesn’t gain weight there can be many reasons and after consulting CHEO’s gastroenterology staff I felt it might be due to lactose intolerance, that would make sense. But when all the testing was done, and the phone call came to bring Camille back to CHEO, I had a feeling my expectations were about to change. Heading to the hospital without knowing why was a stressful drive. Camille was admitted on a Friday, and the CHEO team monitored her over the weekend while we waited anxiously for a diagnosis. Learning that Camille had Cystic Fibrosis (CF) made all of that seem like the calm before the storm.
In some ways CF is calm, or at least orderly. The disease has a well-developed diagnosis and treatment plan. After all the unknowns and the waiting, we brought her home knowing what we were facing. Thanks to the Genetics Team at CHEO, who have benefited from your past support, we were able to pinpoint Camille’s exact gene mutation. While this precise information is certainly important, and we were happy to have the assessment, clear diagnosis, counselling and follow-up from such a skilled team, it doesn’t change much for Camille. Doctors treat the symptoms of CF but the reality remains that there is no cure.
That’s how Camille’s CF story began. When she was little, her father and I became experts in the chest clapping techniques that loosened mucus to clear Camille’s airway. These daily 20 to 30 minute physiotherapy sessions to ease her breathing are something all CF patients and families know very well. Being able to take charge of their care is something CF patients must learn to do, and the earlier they start, the better. This condition is a non-stop daily responsibility. We plan everything, even if we’re on vacation we need to make time for physio, medication and meal planning. Camille will tell you, “CF does not go on vacation.” I’m so proud of her. She’s up just after 6 a.m. and does her chest-clearing physio for 30 minutes right away. She’ll fit in some homework and take her medication. Then she’s off to school before 7:30 a.m. with her meals ready and the enzymes she has to take whenever she eats so her body can absorb the nutrients.
Like many CF patients you can’t tell that Camille has a serious illness. Still, before most kids get out of bed, she has already been managing her condition, she can never ignore it. Everything from physical activity to having a quick snack has to be carefully managed. This gives her wisdom beyond her years and she handles it with such good humour. I like to think that her father and I, her big sister, and her devoted grandparents have a lot to do with that.
When a lung infection or other virus comes along it brings Camille back to CHEO for a week or two. This happens a couple of times a year and the medical team will administer antibiotics to improve her lung function. The medical team is like a second family for Camille, despite everything, CHEO is a welcoming place.
Throughout Camille’s journey with CF there has been so much going on in the background. Work that has helped our family to improve nutrition, battle lung infections when they happen and keep as active as possible. But the shadow of CF has always been there. Camille celebrates being able to dance, play badminton and take bike rides with friends and family, she knows what’s coming and will tell you clearly, “I’m still at an age where I can do a lot of physical things…as you get older there is less you can do.” This is true for all of us, but it packs an added punch coming from a thirteen year old.
My family is well educated in CF and we knew what to expect. Until this year. In 2021 a new drug, Trikafta, was approved by Health Canada and officially added to Ontario’s CF treatment plan for patients 12 and older. As I write this letter to you Camille is beginning her new medication, one that does not treat symptoms but targets the results of the mutated gene. I feel like the scientists who have been working behind the scenes all this time, doing the kind of research that your donor dollars have supported, have come into the light. We don’t know yet what this advancement will bring but we are hopeful. Camille is the first CF patient at CHEO to begin taking this new medication. I feel my expectations may be changing once again. Medical research is not fast, but when the discoveries come, lives are changed.
Camille says she wants to grow up to be a teacher or a doctor. I think she would be great at either one. Because of CF she has been a student of medicine her whole life. With family support she has taught herself how to plan and to manage a complex situation. What gives me so much hope, even though it doesn’t come with clear answers, is that there is always a team working on the solutions, at CHEO and around the world. Because of donors like you, who support work you may never see, kids like my Camille will get a chance to go beyond the limits of what we thought was possible. Thank you for your past support and please consider, if you can, supporting CHEO again so that families like ours can continue to benefit from life-changing research and care. From my family to yours, thank you.