Just wanted to remind you that May is Cystic Fibrosis Awareness Month. Please do your best to help raise awareness to help fight CF. I'm personally raising awareness by blogging, fundraising and participating in the Great Strides walk on Sunday May 30 2010 at Safari Niagara in Stevensville Ontario.
What are you doing to help raise awareness and to help fight CF? Drop your comments below. And, send others to this site as well.
I haven't posted much over the last month. That's gonna change for May. I'm putting the finishing touches on a series of posts, entitled, "Cystic Diagnosis". In this series, I'll be sharing our personal diagnosis story. When we found out that Katie had CF. The process that took place to verify things. How we responded. etc.
And, I'm also going to fit in a post series on bioethics. As many of you are aware, we're expecting our third child. Our daughter has CF. That means that Julie and I are both carriers. That means that Dow baby #3 has a 1 in 4 chance of having CF. Plenty of thought went into the decision to have a third child. We'll share a bit of our thinking on that one. And, Dow Baby #3 is due this month (due date = May 27 2010). So... this bioethics series will be especially timely.
Let's make this year an even better one!! If you are unable to make a financial donation, please consider our family in your thoughts and prayers. Cystic Fibrosis is something that we deal with on a daily basis. It is these fundraisers that give us tremendous hope for the future!
I just want to say thank you to the many people who have donated or signed up to walk with us on Sunday May 30 2010. You have been very generous and we appreciate all of the love and support.
As many of you know, my daughter Katie has Cystic Fibrosis. Katie was diagnosed with CF on September 30 2008. She was 17 months old at the time.
On Sunday May 30 2010, the Canadian Cystic Fibrosis Foundation will be hosting the annual Great Strides walk for cystic fibrosis. We will be walking and invite you to join us for this annual event.
Please watch our video, which provides a window into our world:
CF, which affects the lungs and the digestive system, is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten. Today, half of Canadians with CF are expected to live into their 40s and beyond.
While life span has improved for patients with CF, quality of life is still an issue. Daily treatments, medication, clinic visits and health challenges are always present. When Katie is healthy, we do two treatment sessions a day with her. When she is sick (cold, flu, etc.), we do three or four treatment sessions with her.
Here’s a brief list of her regular medicine intake and treatment regimen:
approx 15 pills a day (enzymes - they help Katie digest food);
vitamin supplements twice a day;
2 to 4 Pediasure nutrition supplement drinks each day;
Nebulizer + medicine - basically, a mist mask that Katie wears twice a day for 15 minutes each time;
Percussion treatment - 15 to 20 minutes of hitting her chest and back - twice a day;
Plus, the following “specialty items” when she is sick with a cold, flu or other sickness:
Oral antibiotics;
Additional medicine in her nebulizer from time to time as her health dictates;
Additional nebulizer and percussion treatment - typically 3 or 4 treatment sessions a day when she’s sick;
Each year, on the last Sunday in May, friends, family and co-workers of people with cystic fibrosis participate in “Great Strides”, which is the Canadian Cystic Fibrosis Foundation’s largest national fundraising event. Walk with us on Sunday May 30 2010.
To assist, you can:
Donate money;
Donate and/or collect pledges and Walk with us on Sunday May 30; and/or
Recruit others to join us in this fundraising event;
