Doctors, Families Rally for Cure for Deadly Birth Defect

Parent's Perspective

KSDK.com News Report of Saint Louis Children's Hospital Press Conference

Monday, December 31, 2007

2008 - The Year of Congenital Diaphragmatic Hernia Awareness TM


Those who are fired with an enthusiastic idea and who allow it to take hold and dominate their thoughts find that new worlds open for them. As long as enthusiasm holds out, so will new opportunities. ~ Norman Vincent Peale

The quote above clearly has made many enthusiastic about Congenital Diaphragmatic Hernia Awareness TM Day and their enthusiasm is contagious. It is so long overdue - CDH needs to be brought to the public forefront. It affects too many families out there, too many infants are born with it, too many die from it and too many have more challenging lives because of it too.


Why - 2008 is the Year of Congenital Diaphragmatic Hernia Awareness TM - one state at a time and in the future one Nation at a time. We can't do it alone but together we can accomplish this massive goal.
Wishing All a Healthy & Happy New Year!

Tuesday, December 25, 2007

Sunday, December 23, 2007

Senator Hillary Clinton ~ Informed of Congenital Diaphragmatic Hernia AwarenessTM & Breath of Hope



This week as I posted, Terri (Ava's Mommy) was able to attend a speech which Senator Hillary Clinton made in Iowa. Terri was able to speak with Senator Clinton for a few moments and told her of Ava, Congenital Diaphragmatic Hernia, Congenital Diaphragmatic Hernia AwarenessTM Day and that Iowa had issued a Proclamation.


Please note - not political here - this is just about raising Awareness for this birth defect that affects 1 in 2,000 births here in the United States, which translates to almost 5 families every week hearing their child has this birth defect. At the moment of diagnoses - that is usually the FIRST TIME anyone hears of it - Breath of Hope is seeking to change that fact!


And Thank You Senator Clinton and all others out there that have accepted our information, issued Proclamations and are making note that we are making a difference and changing things!

Terri, thank you and your sister and your family for letting you go out and raise Awareness - they are also key in this too!

Breath of Hope, Inc. is a public non-profit organization does not endorse candidates for any office.

Friday, December 21, 2007

Congenital Diaphragmatic Hernia Awareness Day Proclaimed

The following states have issued Proclamations or are pending to issue them:
Mississippi
Iowa
Pennsylvania
Virginia - pending
Maryland
Nebraska
New Hampshire
Alabama
Georgia
Michigan
Maine
Wisconsin
Indiana
Connecticut
Missouri
Tennessee
Rhode Island
New York - pending
Oregon - pending
This is 19 States of 50! Over 38% and we have - since September - these states have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day! A few have Proclaimed the WHOLE MONTH of March as Congenital Diaphragmatic AwarenessTM Month!
Thank you all who have wrote letters and sent in the sample proclamations! THIS is the action needed to spread Awareness! This gives us a platform to tell our stories and to raise awareness!

Congenital Diaphragmatic Hernia AwarenessTM on A NATIONAL Level!

Yesterday evening one of our Directors, Terri who is in Iowa, went out to see Hillary Clinton speak. This has nothing to do with politics or political affiliations. Terri was thrilled to meet this First Lady and Candidate for President. As anyone would be, this woman has made history.

Terri was able to tell her that her beautiful daughter, Ava, is a survivor of congenital diaphragmatic hernia and that Iowa has signed a Proclamation for March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day. Which Ms. Clinton, replied, "A Proclamation, that is wonderful." Terri also handed her one of Breath of Hope's AwarenessTM Day brochures.

This in itself is spreading awareness - but it can be done by anyone - everyone - from Presidential Candidate to Mayors to the person waiting in line with you doing holiday shopping - can be made aware!

Breast Cancer Awareness did not get as big as it is now - overnight - it takes small steps, one by one to get it to the level it is now!

Breath of Hope, our members, our friends and our volunteers are doing this! One step at a time.

Friday, December 14, 2007

One Heart Touching Another Heart

In our deepest moments of struggle, frustration, fear, and confusion, we are being called upon to reach in and touch our hearts. Then, we will know what to do, what to say, how to be. What is right is always in our deepest heart of hearts. It is from the deepest part of our hearts that we are capable of reaching out and touching another human being. It is, after all, one heart touching another heart. --Roberta Sage Hamilton
______________________

We have had several babies born recently ~ two precious ones became angels and others are on that roller coaster ride in the NICU. We have had two babes re-herniate and one is back home and one is continuing the fight. We have a few more expecting. I saw the quote above and thought of how fitting it was to congenital diaphragmatic hernia support for families. Those of us who have already walked the walk - our hearts are with them.

At least these families know they are not alone.

Saturday, December 8, 2007

Bee Symbol - Congenital Diaphragmatic Hernia Hope...

From time immemorial, bees have symbolized humanity's wish for increased health, strength, endurance and prosperity. Napoleon valued bees for their industry and dedication, decorating his coronation robes and official crests with bee symbols.

Based on the startling observation that a bee's body is too big for its wingspan to be able to carry, many people feel it's a miracle that a bee can fly at all. Some therefore think of bees as good luck, and as encouragement for getting through tough times. Bees are also a symbol of empowerment and hope in the face of great odds.

Bee pollen honey is reported by holistic healers as having special healing characteristics; bee venom is even being experimented with as a treatment for cancer. No matter what you might think about the nature of bees, their industriousness and productivity is astounding.

Monday, December 3, 2007

Faces of CDH - 2008 Wall Calendar


Breath of Hope's 2008 Wall Calendar is now available - Faces of CDH - Above is March 2008

Cafe Press is also having FREE shipping for orders over $50!




Sunday, December 2, 2007

Congenital Diaphragmatic Hernia Awareness - First Step, Second Step & Beyond....

The first step toward change is awareness. The second step is acceptance. ~ Nathaniel Branden

Breath of Hope is seeking to change the simple fact that many people do not know about Congenital Diaphragmatic Hernia a birth defect which will be diagnosed to 5 families in the United States alone every day. Devastating statistics even more devastating to the individuals and families that this birth defect affects.

When an unborn child is diagnosed with this condition - many Moms and Dads first hear what doctors have to tell them about congenital diaphragmatic hernia - they are made aware. The second thing they do is scour the Internet for information. Much of it should be dismissed because it is about a child who was treated and became an angel more than 5 years ago - and treatment has changed. They accept that this could take their unborn child's life. Or in some cases their new born child's life.

Breath of Hope's first step is to raise awareness to all about this gruesome birth defect. Through raising awareness - there will be more research, more families that are prepared and know of this birth defect and less will have to be explained.

We now have the following states that have Proclaimed March 31, 2008 as Congenital Diaphragmatic Hernia AwarenessTM Day:

Mississippi
Iowa
Pennsylvania
Virginia - pending
Maryland
Nebraska
New Hampshire
Alabama
Georgia
Michigan
Maine
Wisconsin
Indiana
Connecticut
Oregon - pending

If interested in writing your State or City or Town, please contact us and we will send you a Sample Proclamation and a Letter you can tailor with your own information. By obtaining a Proclamation by each state and soon Country we will be spreading the word and making all aware of Congenital Diaphragmatic Hernia.

When diagnosed - these families may have heard of it and know that they are not alone and there is support.

Every Breath They Take Is Our Breath of Hope!