The statistic that one in every 3,600 children is born with cystic fibrosis (CF) in Canada would be reassuring to most expectant families – the odds seemingly stacked against it happening to them.
However, when you find yourself on the wrong end of that statistic – when that ‘one’ child is your own cherished child – it is invariably a huge shock.
Shaun and Katarina Nechvatal who live in Saskatoon, Saskatchewan in Canada, describe the shocking day that cystic fibrosis entered their lives in an absorbing video that can be found on their website http://www.hoopsforhope.ca/ or on this YouTube link: https://www.youtube.com/watch?v=qrUkqKOI0Aw
Cystic fibrosis is a life-shortening genetic condition – only half live to celebrate their 40th birthday. It causes the internal organs, especially the lungs and digestive system, to become clogged with thick sticky mucus, resulting in chronic infections and inflammation of the lungs.
Families dealing with a new diagnosis of cystic fibrosis are often overwhelmed by the huge burden of treatment they must now face on a daily basis. The whole family has to adapt and find ways to fit daily physiotherapy, treatments and regular clinic appointments/hospitalisations into their lifestyle - there is so much to learn because CF is a very complicated disease.
For all of these reasons, it can often be hard to also take on the role of fundraising for the CF cause. However, the Nechvatal family were quick to come up with a quite unique fundraising idea and as Shaun explains, funds that are directed into research have already revolutionised the outlook for those living with CF.
“Forty or fifty years ago if you had a child that was diagnosed with cystic fibrosis, you were told he or she may not live to see kindergarten” said Shaun. “Fortunately through fundraising efforts like Hoops For Hope and others, that can change. We can have a positive effect on the lives of those that battle cystic fibrosis everyday. We want to be as positive as we can and be as proactive as we can in being involved in battling this disease.”
It was with this attitude in mind that in 2010 Katarina came up with the idea of hosting a ‘3 on 3’ basketball tournament fundraiser – Hoops For Hope. It was an ideal fit for the family as Shaun has a background in college basketball and coaching.
The tournament has become an annual event that in 2016 raised over $50,000. Hard to top you might think - but thanks to the hard work and commitment of Shaun and Katarina, Hoops For Hope raised an even more staggering $70,000+ in 2017! The event averages about 50 teams, with age divisions of u13, u15, u17 and adult.
At the most recent Hoops For Hope tournament they invited some of the participants to try the ‘Breathe With Me’ Strawfie Challenge. The Strawfie Challenge asks people to try breathing through a straw with a pinched nose, an action which simulates the struggle to breathe for those living with CF.
“It had a great impact on those that tried it” said Shaun. “People commented that it was a lot harder than they thought it would be. One person said that they couldn’t imagine being active and having to breathe through a straw. One mom who knows our son,
was actually moved to tears when recalling what the straw breathing felt like.”
If you would like to include the ‘Breathe With Me’ Strawfie Challenge in your own CF fundraising event, take a look at www.breathewithme.org for ideas and inspiration,
or check out our CF awareness video: https://www.youtube.com/watch?v=XtSnCob4Ac0
To follow Hoops For Hope – and perhaps sign up for their next fundraiser if you live in Canada, keep up-to-date at https://www.facebook.com/hoops4hopesk/ or https://twitter.com/Hoops4HopeCF
Working together we will beat cystic fibrosis.
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