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.

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