Congenital Diaphragmatic Hernia Awareness Day TM is Announced

We have informed our members that Congenital Diaphragmatic Hernia Awareness Day has been launched. So far we have heard back from Mississippi and they signed the Proclamation and returned it! Iowa has contacted the Director who mailed it in and willing to sign it for the whole MONTH! We just heard from Pennsylvania too. Virginia will be sending it out in January.

A letter and a sample Proclamation and a forty-one cent stamp and we are working on cities and towns too! We have had a total of 15 so far send in these to their state, Commonwealth or Republic.

We are spreading awareness....

A Tribute to One of My Heros

I want to work for a company that contributes to and is part of the community. I want something not just to invest in. I want something to believe in. --Anita Roddick

http://www.time.com/time/printout/0,8816,1660911,00.html

It seems like a lifetime ago - before Cecilia and before I had heard of the birth defect Congenital Diaphragmatic Hernia - I studied Anita Roddick and her business. I even wrote a speech I had to give in a Business Public Speaking Course I took in College on her. (When I went back to get my degree.) I admired this woman so much for taking a stand and trying to make a difference in this world.

A few months ago, I found her blog and had lost touch with what Ms. Roddick had been doing and learned that she was fighting illness, had sold her company and was still being the activist she always had been through her life. I want to live like that and also die like that!

Of course, my mother, my grandmother and my sister and my daughters are my heros in my life but I also can include Anita Roddick in that category also.

I recall that stock of her company fell a bit and the accountants were informing her of this "great loss". Her reply to them was something like this: "All on paper, we didn't really loose any money because we didn't have it in the first place."

If more CEOs would view it that way!

Seize this Life

Live with intention. Walk to the edge. Listen hard. Practice wellness. Play with abandon. Laugh. Choose with no regret. Appreciate your friends. Continue to learn. Do what you love. Live as if this is all there is. --Mary Ann Radmacher

Seize this life - no matter what it gives you - you can take the bad and turn it around. Someone recently said I am such an advocate for the CDH babies born - I hope so - not just those that go to heaven like my daughter - but those that grow and thrive in this world too.

Working for Breath of Hope and the members is what I love to do, my children and family are also what I love but in many ways - BoH has become a family.

There is Beauty in Simplicity

I have learned by some experience, by many examples, and by the writings of countless others before me, also occupied in the search, that certain environments, certain modes of life, certain rules of conduct are more conducive to inner and outer harmony than others. There are, in fact, certain roads that one may follow. Simplification of life is one of them. --Ann Morrow Lindbergh

I read this quote and thought of the journey that a family and friends travel when having a child with congenital diaphragmatic hernia. I also thought of how NOT simple and how simple the treatment for CDH - surgery, repair the diaphragm. It sounds so simplistic - yet it isn't and there are so many factors that determine if the little spirit will survive and be the amazing kids that all these survivors of CDH are - or become the amazing spirit that we know they are in heaven.

One of our babes is going through surgery today at John Hopkins and another babe just went through the Tracheal Occlusion in Rhode Island with some issues arising. We hope that the simplicity of our prayers, hopes, thoughts and lung function chants meet with survival of these two little spirits.

This spoke to me - Personally

It is to the credit of human nature, that, except where its selfishness is brought into play, it loves more readily than it hates. Hatred, by a gradual and quiet process, will even be transformed to love, unless the change be impeded by a continually new irritation of the original feeling of hostility. --Nathaniel Hawthorne

And those out there that are the irritation - know who they are....

501 (c) (3) IT IS OFFICIAL as of May 17, 2004

We just received the Advance Determination Letter from the Internal Revenue Service, Department of the Treasury - Breath of Hope, Incorporated is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue Code. Contributions are deductible under section 170 of the Code. We are qualified to receive tax deducible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code.

Effective Date of Exemption - May 17, 2004 ;-)

Yahooooooo! All that paperwork, the late nights, the editing, the reading and research PAYED OFF!

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.

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! ;-)

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

~ 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."