Comments for Breathing As A Family with Cystic Fibrosis

Comment on Team Katie – Great Strides 2013 by Kerilyn

Kerilyn — Sat, 13 Apr 2013 02:35:31 +0000

Hi Todd, This past March my 4month old daughter was diagnosed with CF. I consider myself a pretty optimistic person but this diagnoses hit me hard. I wanted you to know that watching Katie’s video on her day to day life was inspiring. I see a lot of our family in your photos and it has helped me more then you know. Thank you for sharing and showing this mom that the great strides walk (hamilton) is my first steps to – as you said it so perfectly – changing CF to “cure found” All the best to your family.

Comment on Breathe by Matt Scales – song lyrics by Janet Angel Rossi

Janet Angel Rossi — Thu, 31 Jan 2013 02:37:24 +0000

My daughter lost her battle with cystic fibrosis at the age of 17 day after her Birthday. Her birhtday was April 1rst & she passed the next day . She was a brave young girl but gone so soon . It will be 10 year anniversary on April 2nd . Not a day goes by that I don’t think of my little girl my only child.I had a song a on a cd about CF & my ex-husband took it . I don’t remember the name of the song but it was very nice.

Comment on About Us by Heidi

Heidi — Thu, 24 Jan 2013 21:25:46 +0000

Todd & Katie,
I came across your blog. My husband Chad has CF. He is almost 38 years old and doing well. We have three biological children…although none of them have cf, they are all carriers of the gene. I don’t normally reply on someone’s blog, but just wanted to tell you thank you for sharing your story and for all that you are also doing as a family to support finding a cure for cystic fibrosis.
~Heidi (Omaha, Nebraska)

Comment on Should bad genes = no more kids? – Part 3: reaching out by CFMom

CFMom — Wed, 12 Dec 2012 19:26:47 +0000

Hi Todd. My husband and I face this question today. When newborn screenings revealed that our first child had cystic fibrosis we thought that we would have to stop at one child or consider alternatives to natural conception. But Jack is now four and a half months old and we are starting to reconsider natural conception as an option for many of the reasons that you’ve stated. Yet we are still plagued with doubt about this decision. We do feel that every life is miraculous and important and we yearn to have another child as amazing as our first son. There is however a nagging worry that it may not be in our potential future child’s best interest to knowingly risk bestowing upon him a chronic illness. We also struggle with the ethics of the decision to knowingly increase the risk of passing on a deffective gene to future generations today and down the road. I would love to continue reading your thoughts along these lines and look forward to the continuation of this series of posts.

Comment on About Us by toddhdow

toddhdow — Thu, 04 Oct 2012 23:30:02 +0000

Eria and Steffan, thank you for your note. Congrats on the birth of your second grandson. Definitely an exciting time. A CF diagnosis, or any health complications, with a child is not a good time. We have heard numerous stories from our friends in the CF community about their struggles. But have hope. Huge advances have been made in CF care and we are optimistic that a cure or an effective control will be available in time to help Katie and the other children that desperately need a cure.

Stay strong, celebrate life and do what you can to get involved, supporting CF Canada and their focus on helping make CF mean cure found.

Feel free to send us a note at any time if you need more info. And be sure to keep a close relationship with your local CF chapter and the medical team responsible for Nate’s care. You’ll find a dedicated, knowledgable and supportive community that will help you through the highs and lows of CF.

Thanks again for the note and talk soon!

Todd

Comment on About Us by Eria and Steffen Larsen

Eria and Steffen Larsen — Thu, 27 Sep 2012 23:50:57 +0000

This year, May 14, 2012, our second grandson was born. We were elated! Less than 24 hours later he was rushed to Sick Kids in London where he had surgery for a blockage in his colon. He spent 10 days in the intensive neo natal unit there but finally came home. We thought he’s a fighter and all will be well. There were still issues with his bowel movements and he wasn’t gaining weight. Constant contact with doctors, nurses. All sure it would just take more time … Three weeks later we learned he had been diagnosed with CF. We really knew nothing about the disease but what we did know was scary and we were devastated. As time has gone by we have of course learned so much more and through sites and blogs like this we relate to everything our little “Nate the Great” will be going through. We are aware of many of the issues you discuss in your blog. Our journey is just beginning. Thank you for all your positive and realistic information you are passing along. God bless you and your family and especially Katie.

Comment on Volunteers needed for Great Strides (Niagara’s largest annual Cystic Fibrosis fundraiser) by Fibrosis Treatment

Fibrosis Treatment — Wed, 15 Aug 2012 07:23:26 +0000

This is really cool. Knowing that there are people who have a good heart to help the patients. May God bless you all.

Comment on Team Katie – Great Strides 2012 results! by toddhdow

toddhdow — Tue, 29 May 2012 04:46:27 +0000

Elizabeth, thank you for the comment. We do appreciate the encouragement as we work to help make our daughter’s life a more healthy life. It seems like such an uphill battle at times, but we are motivated by hearing of others that are doing well in spite of this disease. How is your son doing? It would be great if you would be interested in sharing more about your family’s story…

Thanks again for the note and I hope to talk with you again soon!

Todd

Comment on Team Katie – Great Strides 2012 results! by Elizabeth Clarke

Elizabeth Clarke — Tue, 29 May 2012 03:53:55 +0000

We were all touched by your tremendous efforts yesterday and over the past 3 years! We have a 24 year old son with CF and have walked down so many of your paths when he was little. He watched your video today and was amazed at your fund raising! Your daughter is truly beautiful. Feel free to contact us to be inspired to live for the future!

Comment on Breathe by Matt Scales – song lyrics by Stephen Fitch

Stephen Fitch — Wed, 25 Jan 2012 05:22:44 +0000

I have CF…I play in a band!! I really want to cover this song. Can anyone provide guitar tab or chords!!? Something?