Doctors, Families Rally for Cure for Deadly Birth Defect

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

Tuesday, December 30, 2008

Friday, December 26, 2008

Congenital Diaphragmatic Hernia Awareness Day 2009

Would you like to truly help with congenital diaphragmatic hernia? In 2008, there were thirty-one states out of fifty in the United States that issued Proclamations declaring Congenital Diaphragmatic Hernia Awareness Day on March 31, 2008. There were over a dozen towns and cities that also issued Proclamations.

In order to generate more research for Congenital Diaphragmatic Hernia there must be awareness. Where does one think all the funding for research is obtained? Our government funds research programs - all of them do across the world. We must make them aware that this birth defect occurs just as often as others they are funding. Before the Pink Ribbon Campaign for Breast Cancer, there wasn't much research or funding to help improve lives or help fight Breast Cancer. Today there is and there is a whole month of Breast Cancer Awareness.

All Proclamations issued are kept by those who receive them, Breath of Hope only asks for you to confirm you mailed it and where you mailed it or emailed your request and if you could send us a picture or a scan of the Proclamation.

In 2009 we hope to have all 50 States! In 2010 we want a Congressperson to sponsor a Bill to make a perpetual Awareness Day for Congenital Diaphragmatic Hernia! The more that write, obtain Proclamations, the more we make people aware of this devastating birth defect which still kills half of those affected.

Please feel free to contact us at to receive the Sample Letter, Sample Proclamation and other materials that you can send to your Mayor or Governor. If you are outside the US, you can write your equivalents in your country too. You can also contact me at

Grass roots campaigns like this work! Politics aside - we are witness to our election here this past year where it was a grass roots effort which proved victorious.

Wednesday, December 24, 2008

Merry Christmas from Breath of Hope

What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.--Agnes M. Pharo ("What Is Christmas")

Friday, December 19, 2008

A Gift of Congenital Diaphragmatic Hernia Awareness for The Hard to Buy for!

This is shameless donation promotion but this is what we can do for you if you are stuck for a last minute gift. Donate (any amount) and we will be happy to email you an acknowledgment letter you can print off and place in an envelope for that hard to buy for person!

We can even email them if they are far away! The recipient of this "gift" doesn't know the amount you donated - just that you made a generous donation to a Public Charity in their name!

And you have the satisfaction of giving - two fold.

We can even provide exactly WHAT DONATIONS DO AT BREATH OF HOPE:

  • Your donation of $10 will provide a grieving family with information to help them through this tragic life-changing event.
  • Your donation of $15 will provide an expectant family with a blanket to wrap their CDH baby in as well as a hand print to keep as a memento of their child's first moments on earth.
  • Your donation of $50 will more than cover one mailing at non-profit bulk rate of our Newsletter.
  • Your donation of $100 will provide a Hospital or Medical Center with our printed materials to share with families.
  • Your donation of $150 will help us provide 1000 awareness ribbons for friends, families, the medical community and the general public. Breath of Hope has always provided these free of charge to everyone.
  • A donation of $25,000 will go towards our future Scholarship Fund for these children to have a college degree and future health professionals to one day work with families.

You can also request your donation go for Congenital Diaphragmatic Hernia Medical Research and we will be sure that it goes into that fund we forward to those doing Medical Research!

So quit scratching your head on what you are going to get that person you just can't figure out what to get - donate in their name - you will feel good - and so will they!

Wednesday, December 17, 2008

Congenital Diaphragmatic Hernia Awareness in New Jersey - March 31, 2009

Chad's Uncle Daniel sent us a photo of the City of Runnemede Official Proclaimation (NJ) - THANK YOU Daniel!

Monday, December 15, 2008

Breath of Hope Scholarships for 2009

Breath of Hope, Inc. is offering five scholarships for a one time payment to institution of higher learning for tuition and books for scholarship winners. These scholarship awards were made possible though Breath of Hope’s Congenital Diaphragmatic Hernia Awareness® Day Campaign and a grant from GMAC Financial.
  1. Miracle Scholarship – for a survivor of the congenital diaphragmatic hernia birth defect.
  2. Hope Scholarship – for any family member of a child who had a congenital diaphragmatic hernia birth defect.
  3. Faith Scholarship – for anyone who is going into or furthering their education in Nursing
  4. Beyond Measure Scholarship – for anyone who will be furthering their education to become a Medical Doctor.
  5. Wisdom Scholarship – for those furthering their education in PhDs, or any graduate degree which would further the research, care and awareness of congenital diaphragmatic hernia.

Each scholarship is a one time payment of $2,000 and will be sent to the institution of higher learning the recipient will or is attending. As with any scholarships, we request all funds are for the tuition and/or books for the recipient’s education and if the recipient is unable to use the funds that they are returned to Breath of Hope so that the funds can be reinvested to continue to benefit future scholarships.

For the Miracle Scholarship and the Hope Scholarship we must have a signed letter attesting that you are either a congenital diaphragmatic hernia survivor or a family member of someone who had/has the congenital diaphragmatic hernia birth defect.

Requirements for all scholarships are a minimum of a 2.0 GPA and write a 500 word essay on your chosen career path and goals. Scholarships are awarded to those who are well rounded students who have been involved with community and philanthropy. Breath of Hope, Inc. may publish all or part of your essays and your name and the college you will attend utilizing this scholarship.

Scholarship Applications are being accepted now and will be reviewed in April 2009 to be awarded by April 30, 2009 for the 2010 academic school year. Complete packets must be received by Breath of Hope by March 31 in order to be reviewed and awarded on this timeline.

To receive the applications please contact in the Subject please enter "Scholarships"

Sunday, December 14, 2008

Worldwide Children's Memorial Day

We wanted to Promote the World Wide Candle Lighting on December 14, 2008 - Compassionate Friends started this amazing event - always the second Sunday in December. Please light a candle at 7 PM your time and extinguish it at 8 PM so our angels will see the ring of light around the world.

Saturday, December 13, 2008


Dear Mrs. Doyle-Propst and Breath of Hope Day of Caring Volunteers,

On behalf of the patients of the University of Virginia Children's Hospital, please accept our most sincere thanks for you donation of the handcrafted memory kits of the Newborn Intensive Care Unit for our littlest patent's first hand print. I cannot tell you how special your gifts are to the families who receive these lovely treasures!

We realize that much time has gone by and I am extremely sorry for my long delay in sending our acknowledgments. Please know that we have not forgotten your kind hearts!

Your group has created such a special and unique keepsake and this is an exceptional gift for our patients' families to receive. We are truly grateful for all the time and effort that you have put in to help our babies and their families.

As always, your contributions help families get through the most stressful and difficult periods of their lives. Your hand print kits create a special way for families to honor and treasure their children.

Please share with all those who have been involved in this effort how much the staff and families value everyone's generosity and thoughtfulness. We greatly appreciate your involvement and aid. We are grateful for your compassion and community spirit ins supporting the families and their children at the University of Virginia's Children's Hospital!


Kimberly A. Garofalo
Volunteer Coordinator
UVA Children's Hospital

Sunday, December 7, 2008

Quote - Appropriate for Congenital Diaphragmatic Hernia Families

What oxygen is to the lungs, such is hope to the meaning of life. ~ Emil Brunner

Monday, December 1, 2008

If You Care...

Many of the families who have survivors of CDH may be denied by their insurance companies a RSV shots which as this sample letter states is a preventative measure to keep not just CDH babies but many children who started in a NICU or have survived through some form of critical care.

Please feel free to use this text for your own letters. All States regulate our Insurance Industry - send this letter to your State Representative and perhaps they will take this under advisement!

Thank you!

Your Name/Address


Your State Representative’s Name and Address

(This should be available on your State Website)

Dear Honorable (Insert Name):

States regulate the Insurance Companies who insure constituents in our area. This regulation protects the consumers and insured. I/we are writing you because there is a injectable shot for Synagis (RSV) which is recommended for infants born prematurely, with heart and lung issues. Synagis is a common virus and it most of us a simple common cold but for these infants and children it can send them back to the hospital and could be deadly. It is also recommended by the American Academy of Pediatrics for children with chronic lung disease up to age two.

These shots are given monthly at a cost of up to or more than $10,000 for the season from late October through April. Just like the flu shot, these are not guaranteed to protect the child from RSV but lessen the duration. Many families have their insurance companies deny coverage for these shots and must appeal after obtaining letters and recommendations from their children’s doctors and specialists. Parents are not subjecting their young children to monthly shots because they want to, but because they feel it is necessary in order to protect them from further setbacks in their development and possible death.

A hospitalization of a child with RSV can run into the tens of thousands and could very well cause further respiratory and developmental issues that would cost more to said insurance companies.

We would like for our state to pass some form of regulation on the Insurance Industry here in (State Name) which would either meet or exceed the American Academy Pediatrics Recommendation for such immunizations on these children.

(Our son/daughter – or any relationship – or your experience here about children that need this preventative care.)

Thank you for your time and attention to this matter. I would be more than happy to discuss further this very important matter.

With kind regards,
Your Name