A Father’s Story – Cystic Fibrosis
“My name is Todd and my daughter Katie has Cystic Fibrosis. Cystic Fibrosis, or CF, is the most common, fatal, genetic disease affecting Canadian children and young adults. CF affects the lungs and the digestive system. Forty years ago, most children with CF did not live long enough to attend kindergarten. Today, half of Canadians with CF are expected to live into their 40s and beyond.
While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. For us, when Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions with her. And, Katie must adhere to a daily regimen of medicine, pills and puffers to help keep her healthy.
This year our family was able to participate in an amazing trip, gifted to us by Make a Wish Canada. Make a Wish is an organization that grants wishes to those struggling with serious medical conditions. We started the process in the fall and found out in April that Katie’s wish of going to Disney World and staying at ‘Give Kids the World’ would come true. Once we found out we had just a couple of weeks to get ready and we were on our way!
The kids were wowed at every turn, from being picked up in a stretch limo to arrive at the airport in style, to having ice cream for breakfast! Katie chose to stay at ‘Give Kids the World’, which is an amazing, mostly volunteer organization that hosts children and their families dealing with serious illness. There are not enough words to describe how incredible all the volunteers were or how special they made our trip. As if this was not enough, we then got to experience the magic of the Disney parks, Universal Studios and Legoland. It is a trip that we will cherish forever and we made a million memories.
This trip was a once in a lifetime opportunity for us. We are so thankful for this wonderful chance to make memories and try to forget about CF for a few days. While we enjoyed Katie’s Wish Trip immensely, we would gladly trade it for a cure for CF!
Katie was born with CF and this is her normal way of living. But to others, Katie looks just like a normal, happy, healthy young girl. I am sharing our story partly to raise awareness of this disease that Katie and so many other young people struggle with, but also as a reminder that people aren’t always what they look like on the outside.
Each and every one of us has difficulties and challenges. Some of those difficulties are physical, and others are mental. We cannot always see those challenges. That is why it is important to reflect on the unseen challenges that we deal with daily and to always remember not to judge a book by its cover. Always be kind and caring to those around us, as we don’t always know the challenges that we keep to ourselves.”