‘The day I found out that I will likely outlive my children’ | CBC News

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'The day I found out that I will likely outlive my children' | CBC News

‘The day I found out that I will likely outlive my children’ | CBC News

Six years ago, I had quite an idyllic existence.

Three happy children, aged six, three and one, and though life had hiccups it was good.

Then a simple sweat test revealed why my daughter, who had just turned six, and my youngest son, who was still a baby, were constantly sick and failing to thrive.

“I’m sorry but both of your children have cystic fibrosis;” those words changed our family’s life forever.

May 22, 2013, was the day I found out that I will likely outlive my children.  

I’ll never forget standing in that small room at the Stollery Children’s Hospital and hearing that my childrens’ lives would be full of hospitalizations and illness, that it would be very difficult for me to return to work, since I was now the full-time caregiver.

In that moment, my world came crashing down. Our family doctor physically held me up, as the shock of the news left me unable to stand on my own. I didn’t want the overwhelming fear and devastation I was feeling to further add to my children’s experience.

Cystic fibrosis (CF) is the most common fatal disease affecting young Canadians. It causes severe damage to their lungs and digestive systems, among other things. There is no cure.

The median life expectancy in Canada for people with CF is 52 but the median age of death in 2017 was 33. That breaks my heart.

Stepaniuk wishes her children could go up free from adult worries. (Supplied by Sharon Stepaniuk)

I have so many hopes and dreams for my kids. But I don’t know if any of them are truly a possibility now for my daughter and my youngest son. Not only will they have shorter lives than my other son, but they will be much harder and filled with many medical complications and declining health. 

Childhood should be free of adult worries. But for us, those worries are always in the background, turning up when there is long-awaited family vacation, a best friend’s birthday party or a family gathering.

So many other things like that have been cancelled when the children end up sick or in the hospital with yet another infection.

My husband and I put on a brave face. But missing out on those things are stripping away parts of their childhood.

While other kids are out playing, they are inside hooked up to their compressor medications, doing chest physiotherapy, taking a myriad of other medications to hopefully stave off infections. So many nights I lie awake wondering if that cough I heard earlier today will turn into something worse that will leave more scars on their lungs.  

As a parent, it is beyond comprehension to know there are currently drugs available that could slow the progression of the disease but we cannot access them.

So many of our first-world counterparts are funding these medications for their citizens. But Canada lags behind.

I believe that Alberta has been a leader in the past for cystic fibrosis care and access to medication, and I want the government to seize this pivotal moment in history, where it can change the course of so many people’s lives.

In an ideal world, my children would start these drugs tomorrow and would grow up breathing easier, go to university, find wonderful partners, have the ability and the choice to have their own children, and grow old with people they love.

Is that too much to ask?

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