Tuesday, May 25, 2010

CDH Summit in Philadelphia, PA

I am so excited to be attending this event next month.  When we were invited we said yes immediately.  It will become an annual event helping to advocate for CDH research and awareness.  There will be 4 CDH organizations there, several doctors, nurses, counselors, researchers and CDH families. 

For those who don't know what CDH is it's a rare and often fatal birth defect called congenital diaphragmatic hernia.  Our daughter, Parker, passed away from complications due to CDH in May 2006 after fighting in the NICU for 20 hours.  We started the The Parker Reese Foundation in January 2008 to help give families hope during one of the most uncertain times in their lives.  You can read more about it at http://www.theparkerreesefoundation.com/ or http://www.theparkerreesefoundation.wordpress.com/

I've never been to Philly before.  There are so many things I want to do and see while I'm there because I probably won't be back for a while.  I'm driving with a dear friend of mine.  I love road trips.  I discovered that IKEA is only 16 minutes from the hotel which makes me very happy!  And I found Terrain at Styers thanks to Eddie Ross.  I'll definitely be making a trip there too. 

Of course we'll be making our way to the Liberty Bell, Phillie's game and the famous Philadelphia Zoo.  And eating a Philly cheesesteak.  It's going to be a great 4 days. 

It's so important for those of us who've been diagnosed with CDH to help others become aware.  My goal is to one day have a woman go in for an ultrasound and not have heard those three words for the first time.  It's as common as spina bifida and cystic fibrosis but yet none of us hear about it until are children are diagnosed.  I feel like God chose me for a reason.  He chose Parker for a reason.  I could sit around and feel sorry for myself and believe me I do sometimes but I want to make a difference.  I want to offer hope to future families. 

Only 29 more days until we leave.  I'm off to get the IPOD ready!

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