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cystic fibrosis

Great Strides 2010 Thank You Party

Great Strides 2010 Thank You Party
Great Strides 2010 Thank You Party

Ever since Katie was first diagnosed with Cystic Fibrosis two years ago, the love and support of our family and friends has been phenomenal. We have been extremely grateful to everyone that has offered prayers, words of encouragement, friendship and support as we adjusted to living life with a fatal disease always lurking in the background.

On the last Sunday of May each year, the Canadian Cystic Fibrosis Foundation hosts the annual “Great Strides™: Taking Steps to Cure Cystic Fibrosis” walk. This past May was our second year attending the walk. It was a greet day – the weather was perfect, we had a great turnout and we had a lot of fun. Check out this post for all of the details from the day.

This year, Team Katie had 210 sponsors and 53 people walked with us at Safari Niagara on Sunday May 30 2010. Team Katie raised over $13,000! Check out the Team Katie – Great Strides 2010 Results! blog post for a full summary of what the team accomplished this year.

To say thank you and to celebrate the success of this year’s walk, we hosted a thank you party for everyone that walked with us this year. The party was held at our house on Sunday August 29. You can see pictures from the event at this flickr slideshow.

We would like to say thank you to everyone that walked with us, donated to this year’s Great Strides walk and/or offered encouragement to us this year. We are truly grateful for the generosity that everyone has shown.

Much love,

Todd, Julie, Noah, Katie & Riley

Categories
cystic fibrosis

Hello Fall and our new blog look & feel

Dow Family 2010
Dow Family at Ball's Falls - Sep 6 2010

I know that I said I’d post on this blog over the summer. I had good intentions… but… that didn’t work out so well. My apologies.

Regardless… welcome to the new look and feel for BreathingAsAFamily.org. I have consolidated all of my blogs on wordpress. I was hosting things on blogger, but, after much deliberation, I decided to switch. I’ll write about the switch and my reasons for doing so on my sister blog, wirepaper.com, in the near future. Check there if you’re interested in some geek reading.

And welcome to Fall 2010! I know it’s not “calendar fall” yet, but, with school back in, it certainly feels like summer is over.

Yesterday, we marked the end of the summer by going on a hike to Ball’s Falls in Vineland, Ontario. We had a great time. And, we got some great pictures as well. As you can see from the picture posted here, Riley has now officially participated in his first “high risk activity” by sitting close to the edge of Ball’s Falls.

Here’s a sneak peak at this fall’s content on BreathingAsAFamily.org:

  • Family update – what we did this summer;
  • Great Strides 2010 Thank You Party;
  • CF in the news: macleans article from Aug 30;
  • CF in the news: “The fear factor in health fundraising” – comment and response;
  • Help me write a book, entitled, “Cystic Diagnosis: Our FIrst Year with CF”;
  • “Cystic Diagnosis” – share your stories of your first year with CF;
  • “Cystic Diagnosis” – what should be in a “handbook for families new to CF”?
  • As my book takes shape, I’ll post content excerpts from time to time as well;

So, check back often. It should be a fun fall/winter. I hope to post a couple of entries a week through the fall and winter.

Talk soon!

Todd

Categories
cystic fibrosis

Do you ever think about losing your child?

For the last few months, Julie and I have been following the story of Eva Markvoort. Eva has been a courageous and energetic CF patient with an infectious sense of hope. We’ve clung to the hope that Eva would succeed against the odds and triumph over the same disease that our daughter Katie has.

The last few weeks have been tough to watch as Eva’s health deteriorated. The finality of her death this past weekend was a reminder to us that our daughter suffers from a disease with no known cure and a cruelly short life span (less than 40 years of age) for over 50% of CF patients.

Seeing someone die from this disease at the age of 25, when that person should be living life, growing a career, getting married, having children, seems horrific to any parent. For many, the thought of a parent burying a child is unthought of. It’s supposed to be the other way around. Parent’s aren’t supposed to outlive their children.

For those parents that do lose a child, it can be sudden, catastrophic and devastating. Car crashes, accidents, violence and suicide can come from nowhere and cripple an entire family with grief. There is no time to prepare. No time to say goodbye. No time to think of what if.

But for us, we understand the freight train that is heading towards us. We know what cystic fibrosis does to the body. We know that it relentlessly eats away at healthy lung tissue, leaving scarred and damaged lungs that can’t process oxygen. They starve the cf patient of air, leaving them unable to breathe.

CF patients deal with daily treatments to help fight off the effects of disease. Julie and I work daily on Katie’s body, doing our best to keep her healthy and to keep infection at bay. We fear for the future. But, we’ve learned that we have to live in denial about what the future holds. We deny that CF will get the best of Katie. We hope that she’s one of the lucky ones – the ones that surpass the average life expectancy. We hope. We pray. We push that fear to the far corners of our minds.

Eva’s situation has reminded us of the gravity of the situation that we face with Katie. Odds are that we will outlive her. Unless something changes. And that something needs to happen sooner rather than later. We can’t wait until Katie is horribly sick with disease to start fighting for a cure. We need to act now, while she has her youth and her health and her vibrant, bubbly nature.

We need to do the heavy lifting now to help find a cure BEFORE Katie needs it so that it is available, tested, proven and reliable when she needs it.

Research looks promising. But I don’t see a cure yet. And I don’t want to wait until Katie desperately needs a cure before we start looking. I’m fighting now to help find a cure so that when Katie needs it, it’ll be there.

Put yourself in our shoes… What would you do if you knew that something was going to prematurely take the life of your child? Would you wait until that time came to start fighting? Or would you work now to prevent ht from happening at all?

Please do help… every little bit helps. Consider some numbers:
According to facebook, the average user has 130 friends. Imagine if each of those friends donated just $10 to a cause. That’s $1300! And imagine if each of those people asked their friends to donate – and their friends donated that same $10, that would total $169,000! It’s crazy what a simple $10 donation could do. And yes, it’s unlikely that those 130 friends would not overlap. But, that’s not really the point. The point is the power of social networks and small donations to help effect change.

So think about it… help us out. Ask your friends to help us out. It’s easy to do. Donate here:
Click here to donate to Team Katie
Click here to register to walk with Team Katie on May 29 at Safari Niagara in Stevensville.

Help us make CF mean “Cure Found”.

Todd, Julie, Noah and Katie

Categories
cystic fibrosis

Great Strides 2010 fundraising and awareness

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.

And, I’d like to share a recent blog post that very succinctly summarizes the video as “a prayer”: http://thefirstmennonitechurch.wordpress.com/2010/03/17/choices-in-iworld/

Thanks Carol for helping to share our message and for recognizing it as such.

Talk soon!

Todd

Categories
cystic fibrosis

Great Strides 2010 – join us in fundraising for a cure!

Folks,

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:

Also viewable here:http://www.breathingasafamily.org/2010/03/team-katie-great-strides-2010.html

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:

  1. Donate money;
  2. Donate and/or collect pledges and Walk with us on Sunday May 30; and/or
  3. Recruit others to join us in this fundraising event;

To join our team, “Team Katie”, and walk with us on May 30 at Safari Niagara in Stevensville, click here:
http://my.e2rm.com/TeamPage.aspx?teamID=146408&langPref=en-CA

To sponsor me directly in my fundraising efforts for Team Katie, click here:
http://my.e2rm.com/personalPage.aspx?registrationID=820204

We thank you for your support. Our wish is that one day, CF will stand for “Cure Found”.

Thanks!

Todd, Julie, Noah & Katie Dow