Doctors, Families Rally for Cure for Deadly Birth Defect

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

Saturday, January 31, 2009

Congenital Diaphragmatic Hernia Medical Research - A Great Start!

At Breath of Hope, we have expectant parents join us and we offer them hope in the face of adversity. These families never stop amazing us all, the dedication they have to their children’s honor and memory. We have many families who do amazing things for the hospitals who helped their child. Most of all, they praise the care of those special nurses, therapists, doctors and staff. How can you possibly measure the dedication of those who work with us to help our children? You can’t. It is not measurable.

We have many survivors go home and share their smiles with us. We also have special angels who grace our hearts. Two precious angels over this last month or so were born and fought at Saint Louis Children’s Hospital in Missouri. Last year, we had nurses from their NICU contact us about getting ribbons and were amazed that we give our ribbons for free. We do this because in wearing a simple turquoise ribbon on your collar, someone may ask and the wearer will tell of Congenital Diaphragmatic Hernia – this is spreading awareness one step at a time.

Cadan Christopher and Ryann Hope blessed us with their short but ever so powerful lives. Both of their families requested donations to come to Breath of Hope and wished it would go to Medical Research that would help Congenital Diaphragmatic Hernia. We contacted one of the amazing nurses at Saint Louis Children’s to see if they were doing anything for medical research related to congenital diaphragmatic hernia. And we found that yes, indeed, they were working on it. If you view the Firstgiving Ticker for Medical Research you can see the running total that will be given to Saint Louis Children’s Hospital in Memory of Cadan and Ryann. We also have invited their families and the many families who have had children at SLCH to be there to present a check to Washington University School of Medicine which does the medical research for Saint Louis Children’s Hospital.

We would also like to acknowledge another special angel, Will, whose parents asked to donated to Children’s Hospital of Philadelphia or Breath of Hope. The funds raised for CHOP are going to Medical Research for Congenital Diaphragmatic Hernia. Will and his amazing parents started CHOP Medical Research for Congenital Diaphragmatic Hernia. The funds to Breath of Hope have purchased blankets and mittens for our Expectant Parent Packages and ribbons for our Awareness Day Campaign.

These babies – though angels – are actively still making a difference and having an impact upon this world.

Tuesday, January 20, 2009

Raising CDH Awareness One State at a Time...

Here are the States - the names beside them have sent in a letter and the sample Proclamation.

Alaska - Megan
California - Tina
Colorado - Misty
Connecticut - Jenn
District of Columbia
Illinois - Tiffany
Indiana - Kelly
Kansas - Tanya
Louisiana - Mrs. Morgan - Will's Grandma
Mississippi - Marsha
Missouri - Jean
Nevada - Stacy
New Hampshire
New Jersey - Daniel & Luis
New Mexico
New York - Joann & Holly
North Carolina - Jessica
North Dakota
Northern Marianas Islands
Ohio - Angela
Pennsylvania - Rick/Nancy
Puerto Rico
Rhode Island
South Carolina
South Dakota
Tennessee - Cindy - will issue!
Virginia - Elizabeth
West Virginia
Wisconsin - Jamie

We have 70 days until March 31, 2009 - and - most states want you to send them in no later than 45 days ahead...

If you see your state or a state a friend or family member could send a Proclmation request in - please do! We would like to get all 50 this year. Next year we want to tackle Congress for a Presidental Proclamation!

If you need the documents - please feel free to email me or


Sunday, January 18, 2009

Quotes On Hope...

We must accept finite disappointment, but we must never lose infinite hope.
-Martin Luther King Jr
Many of the great achievements of the world were accomplished by tired and discouraged men who kept on working.
-Dale Carnegie
Each time a person stands up for an ideal, or acts to improve the lot of others,Or strikes out against injustice, they send forth a tiny ripple of hope … and crossing each other from a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.
-Robert F Kennedy
Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.
-Lin Yutang
We should not let our fears hold us back from pursuing our hopes.
-John F Kennedy
People once considered that religions were obsolete and that material science would solve all human problems. Now, they have become disillusioned with materialism and machinery and have realised that spiritual sciences are also indispensable for human life.
-Dalai Lama
"Hope is not blind optimism. Its not ignoring the enormity of the task ahead or the roadblocks that stand in our path. Its not sitting on the sidelines or shirking from a fight. Hope is that thing inside us that insists, despite all the evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it....Hope is the bedrock of this nation--the belief that our destiny will not be written for us, but by us. By all those men and women who are not content to settle for the world as it is--who have the courageto remake the world as it should be. Together, ordinary people can do extraordinary things."
- Barack Obama

Hope -- Hope in the face of difficulty. Hope in the face of uncertainty. The audacity of hope! In the end, that is God’s greatest gift to us, the bedrock of this nation. A belief in things not seen. A belief that there are better days ahead.
- BARACK OBAMA, speech, 2004 DNC Convention

Saturday, January 10, 2009

How Can YOU Make A Difference?

When a parent tells someone their child has congenital diaphragmatic hernia and explains the condition – people say “I’m sorry”. (We don't want their sympathy.) When they explain that their state, city or area has issued a Proclamation and March 31 is Congenital Diaphragmatic Hernia Awareness Day – people take notice. After all, if the state thinks it is important enough to have a day – they need to be made aware.

In order to promote public awareness of congenital diaphragmatic hernia and encourage research efforts to one day successfully treat all those diagnosed with this birth defect we must make sure each state is aware. It starts, as it has with each and every state. If you would like to write your Governor we can provide you some sample documents as guidance for this task. Please email

You write your Governor or Mayor of your city and tell your story and request March 31 be proclaimed as Congenital Diaphragmatic Hernia Awareness Day. A day the residents learn more about congenital diaphragmatic hernias and support those who are affected.

We still have parents coming to us that have never heard about this birth defect, until they were diagnosed. This effort is to educate the public, our governments and the world.

Last year there were 31 states that issued Proclamations declaring March 31, 2008 as Congenital Diaphragmatic Hernia Awareness Day – we would like to see all 50 in this nation declare March 31, 2009 as Congenital Diaphragmatic Hernia Awareness Day.

Wednesday, January 7, 2009

Breath of Hope Website Update

Our website has been updated.

Our thanks to Steve Berry at Berry Web Designs for the work he has done. We will be updating it with more pages and information in the future.

Thank you Steve!

Tuesday, January 6, 2009

Amazing Quotes...

The truth is incontrovertible, malice may attack it, ignorance may deride it, but in the end; there it is. - Sir Winston Churchill

A fanatic is one who can't change his mind and won't change the subject. - Sir Winston Churchill

A lie gets halfway around the world before the truth has a chance to get its pants on. - Sir Winston Churchill