What a great device! Julie found this online and ordered one. Order total = $31.50 which includes shipping. The device even came with an extra “Bubbles the Fish Pediatric Aerosol Mask”, which is a bonus so that we can rotate masks more often.
To use it, all you do is put the strap on your child’s head, adjust the fish mask on the face and then attach the nebulizer to the front of the mask. Easy as 1 2 3.
The product creator, Melissa, was motivated to make this mask holder for a friend’s child, who has CF. According to Melissa, “This mask holder was created for a friend of mine to help with her son’s breathing treatments. Her little boy has Cystic Fibrosis and must have multiple breathing treatments every day. She struggled with getting the nebulizer mask, with its flimsy elastic strap, to stay on his head securely.”
And, as an added bonus, Melissa will also donate a portion of any purchase referred by Breathing As A Family to Cystic Fibrosis Canada! Simply mention that you heard about this here (and mention Team Katie) during the checkout process (there is a spot for additional comments on Etsy when you place your order) and Melissa will do the rest.
As you may know, our daughter Katie Dow is a 4 year old Beamsville resident with Cystic Fibrosis. Team Katie is the group of family, friends and co-workers that are rallying around Katie to help find a cure to for Cystic Fibrosis and we are looking for corporate donations for the 2011 Great Strides Walk.
Please consider sponsoring Team Katie in the 2011 Great Strides walk, which will be held on May 29 2011 at Safari Niagara in Stevensville.
The cause: Help find a cure for Cystic Fibrosis
The need: Cash donations. Donations of goods or services will be:
Auctioned or sold and the proceeds donated as cash; and/or
Awarded as incentive prizes to Team Katie and/or CF Niagara walkers;
Note: 100% of the proceeds from all cash and/or donations will go directly to Cystic Fibrosis Canada via Team Katie as part of our 2011 Great Strides fundraising.
The recipient: Cystic Fibrosis Canada (which is a registered Canadian charity)
The business benefits of sponsoring Team Katie:
Support a local charity need;
Encourage a local family;
Great marketing opportunity;
Team Katie communicates directly with over 500 individuals, many of whom are located in the Niagara region. This includes family, friends, co-workers and other supporters of Team Katie. This group of people is passionate about this cause and they are acutely aware of (and supportive of) the help that is provided by other Team Katie sponsors, including you!
We use multiple avenues to communicate with Team Katie supporters, including, but not limited to, the following:
Special mention at end of Great Strides campaign thank you email and blog post to Team Katie distribution list
Runner level – for donations from $500 to $2,500:
All of the Walker level benefits; plus
“Runner” level sponsorship placement on breathingasafamily.org in the right side navigation area right below “Support Team Katie” from time of sponsorship until February 28 2012
I’ll create a Facebook fan page for your business and advertise it to my network to help raise your company profile
Marathoner level – for donations over $2,500:
All of the Runner level benefits; plus
“Marathoner” premium sponsorship placement on the header (top of the page beside the site logo) of breathingasafamily.org
“Marathoner” premium sponsorship placement on all emails that are sent on behalf of Team Katie and Breathing As A Family from time of sponsorship until February 28 2012
If you are interested in donating $7,500 or more, please contact me directly. I’ll find a creative way to make that size of a donation worth your while (all of the above, plus web marketing consulting, website design, etc.) Trust me, it will be money well spent!
To support Team Katie:
Sponsor Team Katie directly by clicking on the “Click here to donate to Team Katie” link on http://breatuingasafamily.org/ (under “Support Team Katie” at top right of the site);
Email (email@example.com) or call (905.563.7195) Todd or Julie Dow directly to discuss additional donation options;
The Hamilton and Niagara chapters of Cystic Fibrosis Canada are still looking for additional volunteers to help out with the Great Strides walk, which will be held at Safari Niagara on Sunday May 29 2011.
People are still needed to do the following activities:
Wrist band handouts
Goodie bag handouts
If you’re interested in helping out, drop me an email at toddhdow [at] gmail [dot] com and I’ll put you in touch with the right people.
Location: 4418 Dennis Avenue in Beamsville Google Map
As part of our fundraising for Great Strides, we’ll be running a garage sale on Saturday May 21 2011. We sent out invites to our neighbours today. Ideally, we’ll be able to make it a street wide garage sale, with some of our neighbours participating.
Some things that you can do to help:
Stop by on Saturday May 21 and find a treasure to take home
Spread the word – let others know about this event and get them to stop by on May 21 as well
Hope for sun on Sat May 21!
And, here’s the note that we sent to the neighbours: Dear Neighbour
We are the Dow family and we live at 4418 Dennis Ave. Our daughter Katie has Cystic Fibrosis.
Cystic fibrosis (CF) is the most common, fatal genetic disease affecting Canadian children and young adults. There is no cure for cystic fibrosis. CF is a multi-organ disease, primarily affecting the lungs and digestive system. A build-up of thick mucus in the lungs causes severe breathing problems. It may be difficult to clear bacteria from the lungs, leading to cycles of infection and inflammation, which damage the delicate lung tissues.
Thick mucus also blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. People with CF must consume a large amount of artificial enzymes (average 20 pills a day) with every meal and snack, to help digest and absorb adequate nutrition from food.
Katie has to endure 2 to 4 hours of treatment a day to try and loosen the mucous in her lungs as well as take enzymes just to be able to digest her food. The median survival age for someone with CF is 47.7. This just isn’t enough for us and Katie needs a cure.
On Saturday May 21st we are having a garage sale to raise funds for Cystic Fibrosis. Our hope it to make this a street wide sale, as we know that many other streets in Beamsville have had major success with this. We will be donating our proceeds to charity, however, there is no pressure for anyone else to do this. In making this a street wide sale, we can advertise it that way and there will be a lot more traffic coming through the area. As well as advertising in the local paper, we are also hoping to have an article written about the event.
If you would like to participate in this yard sale, please let us know by giving us a call at (905) 563-7195 or emailing us at firstname.lastname@example.org.
As many of you know, our 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 29 2011, the Cystic Fibrosis Canada 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 each day with her.
Here’s a brief list of her regular medicine intake and treatment regimen:
– approx 20 pills a day (enzymes – they help Katie digest food);
– vitamin supplements;
– 2 to 4 Pediasure nutrition supplement drinks each day;
– Nebulizer + medicine – basically, a mist mask that Katie wears twice a day for 20 minutes each time;
– Percussion treatment – 20 minutes of hitting her chest and back – twice a day;
– Inhaled antibiotics – 2 weeks on, 2 weeks off year round;
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 Cystic Fibrosis Canada’s largest national fundraising event. Walk with us on Sunday May 29 2011.
To assist, you can:
1. Donate money;
2. Donate and/or collect pledges and Walk with us on Sunday May 29; and/or
3. Recruit others to join us in this fundraising event;
Yes, I know it’s already January 13th. I’m a bit late on my first post of the new year. 🙂
The last few months have been rather hectic. Plenty going on. And yes, I have neglected our blog for far too long. For that, I apologize.
So, to get everyone up to speed, here’s what we’ve been up to.
October: Plenty of good times. We checked out “Touch a Truck” in Niagara. We celebrated Noah’s 5th birthday. We visited Bry-Anne Farms in Fenwick, Ontario. The kids had a blast! And of course Halloween was fun.
November: Not much to report… Got ready for Christmas. Kept busy with work and play.
December: Busy month. We started the month with a sick household. We think that the cold/flu/whatever it was hit us early this year, affecting all of us at one time or another. Katie seemed to keep healthiest – I suspect that her daily CF treatments helped keep her lungs clear, and thus, helped to keep her healthy as well.
We had a special Christmas this year as well. We went to Ottawa to visit with my sister Stacey’s family: Stacey, Paul, Ben & Max. They have a bit of a hobby farm at their place. Needless to say the kids loved it. They even got to feed some sheep!
From there, we went to Julie’s extended family Christmas, which was hosted by Julie’s Uncle Steve and Aunt Ingrid in Ottawa this year. We had a great time there as well. Plenty of family time and we got out to see the Museum of Civilization in Hull, Quebec as well.
Which brings us to January. Plenty going on now as well. I’ll update more on that in my next post. Watch for that post within the next couple of days.
And yes, that book is still on my list. I’m working on it.
The Canadian Medical Association Journal (CMAJ) recently published an article and two letters (see footnotes at the end of this post) that dispute (one of the letters defends the marketing) the accuracy of the ads depiction of living with CF, and thus, question the effectiveness and appropriateness of the advertising campaigns themselves.
The criticism is mainly directed at protecting CF patients and their families. The main target of the criticism is an ad that depicts CF as being “like drowning on the inside” and the ad shows a child’s face barely held above the water, visibly struggling not to drown. This is most distressing for CF patients and their families, as it puts a very real visual of “what’s to come” to a disease that many live in denial about.
Many families that live with CF live in denial that CF will catch up with them. This is a survival tactic that allows patients to live a life of hope, living with the understanding that they may beat the disease. When vivid visuals are shown, it does provide a real-life horrific reminder of what CF patients live with and what they may experience as CF wears away at the lungs.
As a parent of a child with CF, I was horrified the first time I saw this ad. Others close to our family are unable to watch the ad. Most days, we do well to put it out of our minds, hoping that a cure will arrive before disease progresses to a point of no return.
According to the article, “Cystic fibrosis, a fatal genetic disease that affects about one in 1600 people, causes mucus to accumulate in the lungs, affecting breathing.” According to Dr Annie Janvier, a neonatologist and clinical ethicist at Sainte-Justine Hospital in Montreal, Quebec, “people receiving proper medical care would at no time, not even when dying, feel as if they were drowning or breathing through straws.”
In defence, June Pierotti, the director of communications for the Canadian Cystic Fibrosis Foundation, says, “the ads are not intended to mislead, scare or hurt anybody. Adults with cystic fibrosis are consulted on advertising concepts, as well as parents of children with the disease. Most people don’t know much about cystic fibrosis”, says Pierotti, “and hard-hitting advertisements are necessary to get people to realize it is a serious problem that deserves attention.”
In response to the letter referenced above, Karen Gliddon (Hamilton and Area Chapter President, Adult Committee Chairperson and CF patient) and Nathan Fish (Ontario Representative Adult Cystic Fibrosis Committee Advertising Campaign Working Group Member) urged, “Unfortunately, in contrast to other major diseases, cystic fibrosis is not well known or understood by Canadians. It is therefore vital that CF advertising campaigns present a powerful and real depiction of what it’s like to live with cystic fibrosis.” Further, “Prior to launching an advertising campaign, the Foundation consults and receives input from the CF community, including parents of children with cystic fibrosis, adults who are fighting CF personally, and healthcare professionals. As leading members of the CF community who approved the current campaign, we recognize that its hard-hitting message may affect some individuals negatively, and we try very hard to minimize this impact.”
The ethics of these advertising campaigns are unclear. The concern to protect CF patients from such graphic and scientifically debatable depictions of the disease is understandable. Yet, it is difficult to truly understand what CF feels like. Thus, “shock and awe” advertising does raise awareness, and with it, funds that are desperately needed for additional research to help find a cure.
I don’t know about you, but, I’m willing to tolerate a bit of debate over the accuracy of the ads if it means additional awareness. I say kudos to the Canadian Cystic Fibrosis Foundation for their campaign. While disturbing to those of us that live with CF each and every day, I am thankful for the awareness and the benefits that the advertising generates.
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.
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.
As many in the CF community know, we lost a great CF champion this past week. Eva Markvoort died this past weekend of CF-related complications at the age of 25. Eva has been a courageous and uplifting CF patient who demonstrated hope and love in the way that she strove to raise awareness of Cystic Fibrosis in hopes of finding a cure and to help raise awareness and support for organ donation.
Eva was the subject of the documentary 65_RedRoses, which is an award-winning documentary. This documentary has been featured at HotDocs in Toronto and the Vancouver Film Festival. The documentary has been broadcast on CBC as well. This documentary will be broadcast again this Friday April 2 at 4am and 8pm. For more details, see this site: http://www.65redroses.com/
The documentary chronicles Eva’s deteriorating health condition from Cystic Fibrosis and her wait for a new set of lungs. The documentary highlights the difficulties of cystic fibrosis, the challenges of organ transplant and the hope for new life that comes when organs become available – donations made available by the loss of another’s life. The documentary ends on a positive note, showing Eva participating in a Dragon Boat race, seeing life in front of her that had not been possible before her double lung transplant.
Two years after her transplant, which occurred in late 2007, Eva’s health began to deteriorate again. This time, her body was rejecting the new lungs that had prolonged her life. Eva held on, blogging about her deteriorating health, her thoughts, her fears, her loves and her dreams.
This past Saturday March 27, at 9:30am, Eva died. This short post announced it to those that were following her struggles on her blog, 65redroses.livejournal.com: “Our beautiful girl died this morning at 9:30. She is at peace. Will write more later.”
Eva’s legacy will be a strong one. Eva has been a lightning rod of activism and awareness for a disease that science has made great strides against in the last 40 years. There is still much to do to beat this disease, but Eva, I thank you for all that you have done to combat this disease and to provide hope to the many that still suffer from this terrible disease.
To honour Eva’s life, please consider making a difference: