“Baby, I’m scared,” said Kirstin Whitford to her husband Joey after she’d shaken him awake. She could no longer rouse him using only the sound of her voice. “I’m terrified you are going to die and I don’t know what to do. I won’t be okay without you.”
It was January 2011 and Joey had reached the point where he was unable to stay awake to hold a conversation. The man she was (and still is) head over heels in love with was exhausted, worn down and struggling to hang on.
“I’m not going to die,” Joey assured his wife. “I have too much to live for.”
Joey died on February 21, 2011. “Cystic fibrosis took him from me at the age of 34,” said Kirstin. “He wasn’t ready and I wasn’t ready, but we didn’t get a choice in the matter. I’m still not okay, but I am trying really, really hard because I know that’s what he would want.”
May is Cystic Fibrosis (CF) Awareness Month. Every week in Canada, two babies are born with CF. It is the most common, fatal, genetic disease affecting Canadian children and young adults. One in every 25 Canadians is a carrier of the CF gene. Carriers often do not know that they are carriers, since they have no visible signs or symptoms of the disease. When both parents are carriers, there is a 25 per cent chance they will have a baby born with CF.
“It’s hard being the grandparent to a child with cystic fibrosis,” said Mim McLellan, whose five-year-old grandson Brendan was born with the disease. “You want the same things for your grandchild as you do for your own children: to see him graduate from high school, get married, start a family of his own, have a full and happy life. It’s difficult to live with the knowledge that his life might be cut short because of an incurable disease.”
Terri Cramb, owner and operator of T-Fit yoga and fitness studio and aunt to Brendan, shares her mother’s sentiments. “I want my nephew to be able to have the same experiences as any other kid. Hospital visits and clinic appointments shouldn’t be something that he has to endure.”
Newborn screening for CF was implemented in BC in 2009. This provides for earlier detection and treatment of the disease but there is still much work to be done. That’s why Cramb and Kirstin are teaming up to fight the disease with the Great Strides Walk for CF.
“Because our families live in different cities, I am not able to help my sister and her family,” said Cramb. “But participating in the Great Strides Walk gives me the opportunity to support Brendan in his battle with CF. I want him to know that I care about him and I’m doing what I can from Powell River.”
The Great Strides Walk will take place at 11 am on Sunday, May 27 at Willingdon Beach. Registration starts at 10:30 am. It is a fun, free family event with lots of great prizes for registered participants.
“I want to help people that are still living with cystic fibrosis,” said Kirstin, “to make sure that what happened to our family doesn’t happen to theirs.”
Registration forms for the walk are available at T-Fit. Interested readers can also register online, learn more about the disease or sponsor a walker.
