Doctors, Families Rally for Cure for Deadly Birth Defect

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

Sunday, September 25, 2011

Laycee Originals

We always tell parents each child who is born with congenital diaphragmatic hernia is different, like a snowflake but they to share several traits - one in particular is they are just inspirational.  Laycee is truly an Original! 

This is from Laycee Originals Facebook Page, there is a link provided at the bottom.

Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 300 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul.  

Link to Laycee Originals

Obviously, Laycee is not just "staring at walls" she is making people smile, connecting with them in a way only a heart understands!  Laycee - you are awesome!

You can go to the link above to find out how to order a Laycee Original!

Thursday, September 15, 2011

2012 Faces of CDH Calendar - Photo Request!

Each year we request photos for our Faces of CDH Calendar and we are asking again if you would like to submit photos, please do so by October 15, 2011.  Our calendars feature these amazing children, both Earthy and Heavenly Angels.  Each month also has an inspirational quote.

Please submit your photos to

These calendars make wonderful gifts for under $25.

Thank you!

Monday, September 12, 2011

Will You Help - Raising a Little CDH Awareness!

Do you see a need in your community to help families who have a CDH child or are expecting a CDH child?  Do you see a need, not being met which we can help you with?  If you do, please contact us at

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list!  As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!

Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU.  Every family who has a baby admitted will receive a hand print kit to capture that moment.  (Not just CDH families - but all families there!)

Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands.  Vital information is given to an expectant or new parent of a CDH baby.  We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day!  This is also a great opportunity to make those aware in your community!  We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document!  We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012.  This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year!  We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!

SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast!  We need volunteers to help if planning to attend!  Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH.  Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public! 

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at if you would like to help or you have ideas to help your community!

As always - Thank you!

Tuesday, September 6, 2011

Tummy Tunnels - Solution for Tube Fed Kids!

Many times we have parents who wonder what clothing do I get for my infant/toddler, snap bottoms, not easy access to the g-tube or mic buttons for feeding.  Tummy Tunnels offers a solution - check them out and please feel free to pass on to all your friends and contacts with kids this can benefit!  All you need is an iron and scissors!

Here is their link:  Tummy Tunnels

Friday, September 2, 2011

Blooms For Hope Fundraiser

Labor day weekend is the end of summer and start of fall for most of us.  We start thinking of the cool crisp days of autumn and the holidays that follow.  We know in February, everyone hopes for an early spring.  Through Flower Power Fundraising Inc - if you place orders for your Spring Blooms - 50% of the proceeds will be given to Breath of Hope.  With each order they also are sending 10 Tete-a-Tete Daffodils.  Fall bulbs are very easy to plant and enjoy in the Spring - it just requires a bit of patience over the winter months.  Blooms for Hope Link (Click Here)