2014 CDH Awareness Day

Once again I'm fundraising for CDH in memory of my son, Shane, for Aypril 19th, the International Day of Congenital Diaphragmatic Hernia Awareness!   Please help if you can and even start your own Firstgiving to help!

https://www.firstgiving.com/fundraiser/DawnWilliamson/cdhawarenessday2014

I am fundraising for Congenital Diaphragmatic Hernia Research because I lost my only child, Shane, to CDH at 6 and a half years old.

CDH occurs when the diaphragm fails to fully grow, allowing abdominal organs into the chest cavity and preventing lung growth.

Shane was born with CDH in 1993 and spent his first 10 months in intensive care.  He came home on a ventilator, oxygen, feeding, trached and blind and deaf.   His entire 6 years were a struggle but he overcame a lot and was a generally happy little boy.  We lost him unexpectedly in 1999.  You can read his story at http://cherubshane.blogspot.com

He was the light of my life and there are no words in the English language to describe how heartbroken I am or how much I miss him every single day still.

Not knowing WHY is the hardest part.  Why him?  Why was he born with CDH?  Did I do something wrong when I was pregnant?  Is it hereditary?  Will future children I have also have CDH too?   Why wasn't there better surgical material to stop my son from having so many surgeries?  I have beat myself up for 20 years now wondering if could have done something, anything differently to save my son and prevent CDH.

1600 babies are born with CDH every single year in the U.S.   50% do not survive.   Every one of those parents are just like me - asking why.

Please help save other CDH babies by making a tax-deductible donation.  Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.

Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

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Making My Son Proud & Doing Right By CDH Babies Everywhere

My son's blog isn't a place for drama but this is too big to not share....

On Friday, our trademark lawyers forwarded us the official letter sent to the United States Patent & Trademark Office stating that the other party is going to relinquish rights to the phrase "Congenital Diaphragmatic Hernia Awareness" that they tried to trademark.

3 years of drama, over 6000 signatures, lawyers, courts, and getting blasted by a few brainwashed people for daring to stand up to this trademark.  Not to mention all the personal attacks on me, my family and my charity and standing up to that.  Is over. Finally, it's over!!!!!   We WON the fight against this trademark and never again can 1 woman try to shut down our charity, sue me, attack me or other families by threatening, suing or harrassing with that trademark.  After so many years of that... it's such a HUGE relief to have it finally over.   There is still a trademark on "Congenital Diaphragmatic Hernia Awareness Day" and God knows the drama would start up again if we tried to use that phrase... so we don't... we raise awareness every day.

It hasn't been an easy journey at all. But we did it!!!!!    1000's of CDH families have backed us, plus other charities and over 100 researchers in fighting against this trademark.   So many families are celebrating now!!!   CDH Awareness if finally FREE again and not only that, but we have set a precedent that no other cause will ever have to endure what we have!!!

There were moments when I wanted to give up.  But I didn't and I am proud of myself for that.  Every once in a while life throws tests at you... do you take the easy road and sell out and give up your integrity?  Or do you stand your ground and hold on to your compassion and honor and knowing what's right?  We held on.  We stood our ground.  We passed the moral test and did what was right.   Doing the happy dance on that one!!!!  :)

This post is written to CELEBRATE and to MOVE ON....

I was made aware of CDH on January 28, 1993... long before someone else felt the need to claim the phrase their "intellectual property".   If it would take CDH out of my life and give me my son back, she can have it.  I hope someday she finds peace and stops targeting her anger at me and hurting 1000's of others along the way.   I don't even hold any anger toward her... I forgive her.  I pray for her.  She must be in awful, horrible pain to do all this stuff.  As a fellow grieving mom... I understand the pain.  Not the lashing out at others, but I do understand the pain... and as a Christian and for my own peace of mind also... I do forgive.   And I hope we can move on.

Now hopefully we can all put this behind us and move on and focus on doing good, positive things for the CDH communities and these families.

We did it....  and I know I made my son proud.   That makes my heart swell and makes it all worth it.  :)

It's time to move forward...