One of our members, Despina, her dear husband and her smiling son, Mason were interviewed for this story - on how parents of NICU children are so Thankful for NICUs!
http://www.13wham.com/content/news/thismorning/story.aspx?content_id=ccf6baaa-6ad7-48dd-8c80-bd07f749b6e0
If you click on congenital diaphragmatic hernia - it links to http://www.breathofhopeinc.com/
This has made my Thanksgiving!
Monday, November 19, 2007
Sunday, November 18, 2007
Doing for Others is Immortal
What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. --Albert Pike
To give of yourself and sacrifice for others so that their troubles are less - is more rewarding than shopping for a new electronic component or clothing. When we give, we gain and we in turn contribute to community and society to make it better.
To give of yourself and sacrifice for others so that their troubles are less - is more rewarding than shopping for a new electronic component or clothing. When we give, we gain and we in turn contribute to community and society to make it better.
Saturday, November 3, 2007
Congenital Diaphragmatic Hernia AwarenessTM ~ How to Help!
If you want to help, go to our website at www.breathofhopeinc.com
There is a tab that will take you to Awareness information. We have a sample letter and Sample Proclamations to send to Mayors and Governors. Please note that we have had the following states Proclaim March 31, 2008 Congenital Diaphragmatic Hernia Awareness DayTM:
Mississippi
Iowa
Virginia - to be issued in January 2008
Maine
New Hampshire - to be issued in the coming weeks
Missouri
Nebraska
Pennsylvania
We have also had the following cities:
Charlotte, North Carolina
Cincinnati, Ohio
Please don't think you can not help if your state or city is listed - this is going to be an ongoing grass roots effort! I am even starting in my area to coordinate events and activities to be done so more people are AWARE! Each person I speak with - is aware now! Raising awareness can be a slow process - but if we all ban together to do this - it WILL be done.
Tony - this is for you - I would be happy to send you the documents - please contact us at:
cdhawareness@breathofhopeinc.com or elizabeth@breathofhopeinc.com
Thank you!
Every Breath They Take Is Our Breath of Hope
There is a tab that will take you to Awareness information. We have a sample letter and Sample Proclamations to send to Mayors and Governors. Please note that we have had the following states Proclaim March 31, 2008 Congenital Diaphragmatic Hernia Awareness DayTM:
Mississippi
Iowa
Virginia - to be issued in January 2008
Maine
New Hampshire - to be issued in the coming weeks
Missouri
Nebraska
Pennsylvania
We have also had the following cities:
Charlotte, North Carolina
Cincinnati, Ohio
Please don't think you can not help if your state or city is listed - this is going to be an ongoing grass roots effort! I am even starting in my area to coordinate events and activities to be done so more people are AWARE! Each person I speak with - is aware now! Raising awareness can be a slow process - but if we all ban together to do this - it WILL be done.
Tony - this is for you - I would be happy to send you the documents - please contact us at:
cdhawareness@breathofhopeinc.com or elizabeth@breathofhopeinc.com
Thank you!
Every Breath They Take Is Our Breath of Hope
Just Do It....And we ARE!
You are to become a creator, not a competitor; you are going to get what you want, but in such a way that when you get it every other man will have more than he has now. --Wallace Wattles
I liked this. Several ideas for Breath of Hope have been created - and that is the intent to push forward with our written materials, our published materials and spread Congenital Diaphragmatic Hernia AwarenessTM.
I liked this. Several ideas for Breath of Hope have been created - and that is the intent to push forward with our written materials, our published materials and spread Congenital Diaphragmatic Hernia AwarenessTM.
Sunday, October 28, 2007
Congenital Diaphragmatic Hernia Tribute
Carrie, Noah's Mommy made the following slide show - we all think it is beautiful - but grab a tissue!
http://www.onetruemedia.com/shared?p=40d3062b7fe1eee0a84b16&skin_id=1602&utm_source=otm&utm_medium=text_url
http://www.onetruemedia.com/shared?p=40d3062b7fe1eee0a84b16&skin_id=1602&utm_source=otm&utm_medium=text_url
TODAY 5 BABIES WILL BE DIAGNOSED
Today almost 5 families in the United States alone will receive the devastating news that their unborn child will have to fight for its life. They have been diagnosed with a potentially fatal birth defect called a congenital diaphragmatic hernia. A congenital diaphragmatic hernia is where the diaphragm in development does not completely close in an unborn baby and organs migrate to the thorax which under normal circumstances is where the heart and developing lungs are located. This defect has a profound impact on lung function.
Thirty-five (35) families a week. One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.
It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies. The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.
What can you do to help save these babies? What will help these families? What can you do to make a difference?
1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2008 for Congenital Diaphragmatic Hernia AwarenessTM Day! When someone asks what it's for – tell them!
written entirely by Elizabeth Doyle-Propst 10/24/2007
Thirty-five (35) families a week. One hundred thirty-three (133) families a month. 1800 families a year. Congenital diaphragmatic hernia occurs just as often as spina bifia and cystic fibrois yet most do not hear of it until their child is diagnosed.
It doesn't just affect the baby, the mother and the father – it affects the whole family and the entire community. This baby will need Intensive Medical Care at a level three NICU with ECMO. The medical bills will total hundreds of thousands and quite often, millions of dollars. These are million dollar babies. The care to save their lives depletes blood supplies at local blood banks – one infant required 6 gallons of blood and blood product in 38 days. Some families will be financially depleted due to the long term care of these children or other costs associated with one or both parents without a job. Without benefits, Medicaid takes over and covers costs. Some families require state and government assistance for short periods of time. This has an effect on communities. Some insurance companies have "Lifetime Caps" and these children reach them very quickly. These children require insurance to provide the therapy they need so that they can accelerate and thrive.
What can you do to help save these babies? What will help these families? What can you do to make a difference?
1. Learn about congenital diaphragmatic hernias.
2. Donate blood regularly, if you can, to your local blood centers to help ensure all patients receive the blood they need.
3. If you know a family affected by CDH, tell them of Breath of Hope –we are here if they need us.
4. If you are looking for a cause to help with – we would welcome your assistance!
5. Wear turquoise on March 31, 2008 for Congenital Diaphragmatic Hernia AwarenessTM Day! When someone asks what it's for – tell them!
written entirely by Elizabeth Doyle-Propst 10/24/2007
Friday, October 26, 2007
www.breathofhopeinc.com is FULLY UP!
Our website is now fully up!
We would like to add a page with all the Proclamations we have had signed by Governors of States and Mayors and a page with more links!
I have had people outside of BoH comment, "Very professionally done." "Awesome." One of the IT guys at work told me, "You all could show me a thing or two!"
Thank you Stacy - you truly did everyone justice - and we can tell by the beauty of the website!
Tuesday, September 25, 2007
Congenital Diaphragmatic Hernia Awareness Day TM is Announced
We have informed our members that Congenital Diaphragmatic Hernia Awareness Day has been launched. So far we have heard back from Mississippi and they signed the Proclamation and returned it! Iowa has contacted the Director who mailed it in and willing to sign it for the whole MONTH! We just heard from Pennsylvania too. Virginia will be sending it out in January.
A letter and a sample Proclamation and a forty-one cent stamp and we are working on cities and towns too! We have had a total of 15 so far send in these to their state, Commonwealth or Republic.
We are spreading awareness....
Tuesday, September 18, 2007
A Tribute to One of My Heros
I want to work for a company that contributes to and is part of the community. I want something not just to invest in. I want something to believe in. --Anita Roddick
http://www.time.com/time/printout/0,8816,1660911,00.html
It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.
A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!
Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.
I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."
If more CEOs would view it that way!
http://www.time.com/time/printout/0,8816,1660911,00.html
It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.
A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!
Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.
I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."
If more CEOs would view it that way!
Saturday, September 15, 2007
Seize this Life
Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is. --Mary Ann Radmacher
Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.
Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.
Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.
Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.
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