The powerhouse behind CeFfort
When you first meet Nicki Perkins you would never
guess that she is sick, let alone has a terminal illness. But the
slight woman has Cystic Fibrosis (CF), a genetic disease that fills
the lungs with thick mucus, leading to serious respiratory
infections and clogs the pancreas, so the body cannot properly
digest or absorb food, leading to malnutrition.
Nicki was diagnosed at the age of four. Doctors told her parents
she likely wouldn't see five and said they should take her home and
give her lots of love. But her family was determined to give her a
'normal' life. But her family was determined to give her a
'normal' life.
It's clear that they more than succeeded and, when Nicki talks
about her experiences with the disease, it packs a powerful
punch.
"I am a miracle at 41, to not only be alive, but to have my own
lungs," says Nicki, "I have a really good quality of life, I can go
dancing, do Crossfit ... maybe not for as long as I'd like but I
can still do these things."
To keep the symptoms in check, she takes hundreds of
medications, enzymes and vitamins and undergoes rigorous daily
physiotherapy. But her deteriorating lungs present the biggest
challenge. Unlike most people she has about 37 per cent lung
capacity which she compares to a boat with holes in it.
"You have a bucket to bail with at the beginning, but then over
time you move to a cup and then to a teaspoon. Research is the key
to plugging the holes."
Raising money for CF research is one of Nicki's passions. "I'm
motivated to raise money for research because it could save my
life, but also because of the impact it will have on generations to
come."
In 2005 she created a foundation, CeFfort, to raise money for
local research. To date CeFfort has raised more than $650,000;
money which is going to better research, better treatments, and
hopefully a cure.
She has raised the money through special events including the
very popular Lung Function which is heading into its
10th year and, more recently, because she is always
looking for a challenge, through Buck Furpees, which challenged
Crossfitters pushed to perform as many burpees as they could in
seven minutes.
"The idea is to have healthy people know what it's like to
struggle to breathe," says Nicki. "and exercise is absolutely a key
part of the physio aspect of Cystic Fibrosis. At Crossfit I may do
half of the workout that everyone else does but I still do the
workout. I am so much stronger than I thought I was. I
underestimated myself."
But she couldn't do it alone. Along, with a dedicated board and
amazing volunteers she is happy for the assistance of Calgary
Health Trust.
"The Trust provides the infrastructure to administrate,
advertise and implement a fundraising endeavour as a community
event, a partnership event or a marquee event without having to
re-invent the wheel. They are an amazing resource for the bake
saler, run coordinator or corporate giant," says Nicki.