cystic fibrosis

Should bad genes = no more kids? – Prologue

In this series, I’ll be touching on an ethical debate within the CF community – should CF parents have more children? This is not unique to CF though. Other genetic diseases like Sickle Cell Anemia and Huntington’s Disease struggle with this same question. Here’s an overview so that you can follow along:

Feel free to leave comments. Discussion is encouraged.



cystic fibrosis

Cystic Diagnosis Part 1: Intro

My daughter Katie was diagnosed with Cystic Fibrosis on Tuesday September 30 2008. Life changed for our family that day.

This post series is a documentary of our family’s experiences in the time leading up to that diagnosis. Writing these posts have been a cleansing experience for me. Putting my thoughts into words is helping me to process our predicament. And it is also helping me to focus on next steps.

My goals for writing these posts are two-fold:
  • First, I hope to offer encouragement to other families that are faced with difficult health issues. Whether the struggles are Cystic Fibrosis or something else, there is a common understanding when we face our mortality and that of our loved ones. We share the same hopes, fears, dreams and disappointments.
  • Second, I hope to raise awareness for Cystic Fibrosis. Much has been accomplished, but there is still much to be achieved. I feel that we’ve measured how deep and wide the Grand Canyon is, and now in order to reach the other side we need to either build a bridge or fill it in. Uncovering the genetic source of the disease and enhanced treatment options to slow the progress of the disease have significantly improved the lives of CF patients. But the end goal remains elusive.

I’ve been told that we’re fortunate. “At least she’s doing okay.” “It could be worse.” And my personal favourite, “She doesn’t look sick. Maybe she’s got a less severe kind of CF”. Most days, I tend to agree. Katie is doing well. She’s a little spitfire. She’s stubborn, tenacious and above all, she’s healthy. For now. But the truth is, she is sick. She needs her daily treatments. Without them, her health will degrade in a hurry. And, unless a cure is found, she will likely die from this disease at a younger age than any of us would like. And for the record, no, there is no “less severe kind of CF”.

But… for now, it’s not as dire as it sounds. Things COULD be worse. And she IS doing okay. But the question remains: for how long? We live every day in denial. Maybe CF won’t catch up with Katie. Maybe she will be one of the lucky ones that lives a full life, growing into adulthood, getting married, having kids, having grandchildren. Hopefully.

In the meantime, we live each day to the fullest. We enjoy our time together as a family. We learn as much as we can about CF. We pray for a cure sooner rather than later. We fundraise and raise awareness in the hopes that it will make a difference. We do her treatments religiously. And we thank God for the time that we can spend together as a family.

Follow us for the next few days as we share our personal story of learning and accepting Katie’s CF diagnosis.

Here is my post schedule for this series:
  1. Intro (this post)
  2. warning signs
  3. family doctor & celiac clinic
  4. Sweat test at the CF clinic
  5. Diagnosis
  6. My nightmare the night after the diagnosis
  7. First clinic visit at McMaster
I’ll try to provide a new post in this series every weekday until it’s complete. Be sure to check back daily.

Talk soon,