Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective News Report of Saint Louis Children's Hospital Press Conference

Saturday, May 30, 2009

Quotes by Gahdhi

“A man with a grain of faith in God never loses hope, because he ever believes in the ultimate triumph of Truth”
“To believe in something, and not to live it, is dishonest.”
“Be the change you want to see in the world.”
~ Mahatma Gandhi

Thursday, May 28, 2009

National Congenital Diaphragmatic Hernia Awareness Day 2010

We just received verbal confirmation that a Senior Senator has agreed to help sponsor the Congenital Diaphragmatic Hernia Awareness Day Bill. This does not mean that we are not continuing to ask folks to help by writing their Congress person - we need as many contacted as possible! We have Sample Letters and the Sample Bill available. If you would like to help - please contact

Also - we are continuing to paint each state Turquoise - so if you would like to request your Governor issue a Congenital Diaphragmatic Hernia Awareness Day Proclamation we have Sample Letters and Proclamations for that too! We also have Sample Proclamations for Mayors to have your city or town issue a Proclamation. Please feel free to contact us at

(No you don't have to be a "member" of Breath of Hope - all we ask is you let us now when you send this in and who too - if you get a Proclamation - just take a picture or scan of it and send it to us! You keep the Proclamation! Or give it to a loved one who was affected by CDH or a Hospital who does wonderful work for CDH Families!)

Thank you!

And in the end, it's not the years in your life that count. It's the life in your years. - Abraham Lincoln

Friday, May 22, 2009

Thank You for All Soldiers, Airmen and Marines

“Let every nation know, whether it wishes us well or ill, that we shall pay any price, bear any burden, meet any hardship, support any friend, oppose any foe to assure the survival and the success of liberty”~ John F. Kennedy
“For love of country they accepted death”... ~James A. Garfield
"A hero is someone who has given his or her life to something bigger than oneself." ~Joseph Campbell
"The dead soldier's silence sings our national anthem." ~Aaron Kilbourn
"How important it is for us to recognize and celebrate our heroes and she-roes!" ~Maya Angelou

Thursday, May 21, 2009

Buy A Shirt - Pay for a Night!

Do you have $16? Do you want a snazzy new t-shirt? You know you do - would you like that purchase to help CDH Families?

Parker's House is expecting 5 families over the next few months - and Parker's house gives families (and their dogs too) a place to stay FREE OF CHARGE.

Orders until May 31 - that is the deadline!

Tuesday, May 19, 2009

Map of Congenital Diaphragmatic Awareness Day Proclamations Issued

States colored Turquoise issued Proclamations for March 31, 2008 and/or March 31, 2009.
We will also be working on a Bill to go through Congress to have March 31 to be the National Congenital Diaphragmatic Hernia Awareness Day.
States will each year have to have requests - if you would like to have a Sample Letter and Proclamation, please email us at
If you know a Senator or a member of the House of Represenatives who will help us by sponsoring the Bill, please also contact us at the above email address!
Our goal is to turn this whole map Turquoise!
Every Breath They Take Is Our Breath of Hope...

Friday, May 15, 2009

Estimated Birth Rate of Congenital Diaphragmatic Hernia Worldwide

The world’s population low estimate is 6 billion. The world birth rate is about 20 per 1000 which would make the number of births every given year at 12,000,000. (You divide 6 billion by 1000 and multiply by 20.) So – with 12 million babies born every year in the world, if CDH has a rate of 1 in 3,000 – this would be 40,000 born with congenital diaphragmatic hernia in the world every day – again an estimate. (You take 12 million and you divide that by 3000 to get 40,000).

This means in ten years there are 400,000 infants born with congenital diaphragmatic hernia and the death rate for these children is 50% so 200,000 die in 10 years. (Multiply 40,000 by 10.)

Each day in this world approximately 109 babies are born with CDH. About 4 babies an hour are born with CDH in the world every day. (Divide 40,000 by 365 – days in a year you get 109.5… then you divide 109 by 24 – hours – and that is 4 rounded.)

Meanwhile, Muscular Dystrophy has a rate of 1 in 6,000 births for the congenital form of this disease. They have Jerry Lewis and a Telethon that earns 65 million dollars for research. MD deserves this funding and recognition.

So does congenital diaphragmatic hernia.

Breath of Hope - What Support is About...

I'll lean on you and you lean on me and we'll be okay. --Dave Matthews Band
Life throws everyone a curb. It happens every day. No one can do it alone. When families are devastated by a diagnoses of congenital diaphragmatic hernia we know it can take many different paths. No two cases are exactly alike. Some of these children survive with little complications, some minor, some have a variety of issues that they outgrow or overcome. Then there are some who struggle, who have so much to overcome and still they choose wings over feet.
The families lean on one another for inspiration, information and understanding. Many times, the only people who truly know what you have been through are those who have been there themselves.

Saturday, May 9, 2009

The First Congenital Diaphragmatic Hernia Awareness Ribbon

This was the first Awareness Ribbon created by Denise in May 2006. There was thought that the colors of black and yellow would infringe upon the Yellow Ribbon (Waiting for the return of a loved one - Military) and the Black Ribbon which is a symbol of mourning. Later, Breath of Hope adopted the color of Turquoise for our Logo and then for the ribbon for the Congenital Diaphragmatic Hernia Awareness Campaign.

A lie has speed, but truth has endurance. --Edgar J. Mohn

Wednesday, May 6, 2009

Peyton's Promise - Run - Walk May 16th

Please bring your family out for a day of fun and help us raise money for babies born with CDH.
Date: Saturday, May 16, 2009
Registration Time: 9:30
Race Start: 11:00
Location: JFK and Promenade, Sea Isle CityPrice:
Adults $25 (pre-registration by May 6th $20)
Kids aged 5-12: $10, Kids under 5: Free!
*additional donations are welcome*If you can not make the race, but would like to make a donation, please send checks to Peyton's Promise, PO Box 122, Sea Isle City, NJ 08243.

Tuesday, May 5, 2009

National Nurses Day - May 6, 2009

Nursing is an art: and if it is to be made an art, it requires an exclusive devotion as hard a preparation, as any painter's or sculptor's work; for what is the having to do with dead canvas or dead marble, compared with having to do with the living body, the temple of God's spirit? It is one of the Fine Arts: I had almost said, the finest of Fine Arts. ~Florence Nightingale

Thank you to all the nurses out there who truly deserve this day!

From all of us at Breath of Hope

Monday, May 4, 2009

Quote for Monday...

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light from within."
~ Elizabeth Kubler-Ross ~

Saturday, May 2, 2009

Quote about Life...

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.
~ Mother Teresa ~