Doctors, Families Rally for Cure for Deadly Birth Defect

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

Monday, July 30, 2007

Real Integrity

Real integrity is doing the right thing, knowing that nobody's going to know whether you did it or not. --Oprah Winfrey

I liked this. I had to share because I believe at Breath of Hope we give credit where it is due when a good idea is shared, no one takes credit for a job or producing something that benefits all members. Our Newsletter was a combined effort. Without those members submitting stories, without members donations and without the support, encouragement and inspiration of all - it couldn't happen.

As a group that will take credit for all efforts in our endeavors to bring awareness to Congenital Diaphragmatic Hernia we will succeed. There is strength in numbers.

I also believe integrity is doing what you say and saying what you do. My supervisor placed in my review document for my daytime paying job. BoH is what I do to satisfy my heart.

Sunday, July 15, 2007

Trisomy 13 - My discovery and the Truth of the Matter

Until Melissa and Bennett-Chadlen I was so uninformed on Trisomy 13. You see I like many heard from the professionals that this was a fatal condition alone and with CDH - even more so. I never knew there were people living with Trisomy 13 into their 40's or that these children were not unlike children with Downs Syndrome (Trisomy 21) and many of these children thrive. I was told they didn't live long. They can learn, they can work, they can go to school - are they not "perfect" - is anyone really? Or are they in their own way?

If you want a child - truly want a child - it does not matter their imperfections and if it does perhaps that may be an imperfection within? No judgement here - some want the perfect life but those of us that have had children with a birth defect - we know this world is imperfect.

Yet sometimes it is the imperfect things in life that are truly the way things should be and should be appreciated, loved and embraced. In doing so you learn to love yourself and then can love others too.

Melissa and Bennett-Chadlen - Thank you!

Links for Living with Trisomy 13 are under the Support Links - and her wonderful letter is also in these links. I encourage everyone out there to read these and start spreading the word to those out there!

Nimkee, I will be sure to help raise the THUNDER for this! ;-)

Saturday, July 7, 2007

Why Breath of Hope Exists

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics), this translates to approximately 1,800 live births with the congenital diaphragmatic hernia birth defect. Cystic Fibrosis occurs in 1 in 3,000 live births in the United States, and Spina Bifida has an occurrence of 7 in 10,000 or 1 in 1,478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida, although congenital diaphragmatic hernias occur just as often, with fatal results. Currently there is no other organization giving the support needed to those affected by the congenital diaphragmatic hernia birth defect, until now. © March 2007

Monday, July 2, 2007

~ Progress ~

Finally our first Newsletter should go to press this week and the mailing should be by next.

The IRS contacted us a few weeks ago, we had two minor things to complete - update and one should be on the way to us and then to the IRS within the next week. We are on track to have 501(c) (3) approval very soon and that will open the flood gates for more work to be done. We are amazed that they needed two minor things from us!

We also started a new "Thoughts & Prayers List" for our members. Thank you Luke and Jordan - your Moms' were the inspiration.

And our website is progressing. Good things come to those who wait. "Patience is a virtue, catch it if you can, found seldom in a woman and never in a man."