Wednesday, April 22, 2009

Letters for CDH

I'm recycling a post that I put up on another CDH parent's blog, because I feel strongly about the effort to take action. Now is as good a time as any! You can check out this new blog about a letter campaign to media/VIPs: http://lettersforcdh.blogspot.com/

I believe whole heartedly that out of our passion as parents who have gone through this all too often devastating journey that not just awareness will come, but break throughs in treatment. I believe that. I wake up everyday and think about victory over CDH.

I know that we all strive to do something to spread the word. Some hold events in their home town, some reach out to media, some provide amazing support to CDH families, some pray and most of us do all of the above. These labors will bear fruit in my opinion. Together we can force change in what has been a somewhat stagnant yet steady fight.

The idea of a round table comes to mind, a meeting of CDH minds! In my professional life when a big task/project needs to be accomplished we hold a meeting, brainstorm and go away with actionable tasks. We're all over the country, yet we all can do something where we are, what is it? Or, maybe it's a collection of things? I'm raising my hand saying a phone conference may not be such a bad idea. Let's get together and figure out what we can accomplish working as a team!

Sarah Mayer
Proud Mama to Jaxson Isaac, born on 5-19-08 with LCDH.
sarahjmayer23@yahoo.com
http://cdhsurvivorjaxson.blogspot.com
Carepage: TheMayers
Posted by Sarah and Barry Mayer at 12:29 PM

2 comments:

  1. Your Gospel-Loving FriendApril 25, 2009 at 4:38 PM

    Your son is adorable!! We're excited about Letters to CDH as well! Our son Noah is now 2 1/2 & was a RCDH baby but you'd never know he was missing a lot of lung! :)

    ReplyDelete
  2. *super dude and super dog*May 1, 2009 at 7:42 PM

    Thanks again for your support! I am excited about this project and hopeful that we can get attention.

    ReplyDelete

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Welcome Jaxson's CDH Journey

Jaxson is a CDH survivor and this blog follows his story and our ongoing efforts to spread the word about CDH.

Jaxson was diagnosed with LCDH at our 20 week ultrasound. His stomach, intestines, spleen, apendix and left lobe of the liver had all herniated into his chest cavity. We were told his chances of survival were less than 50% and that he had an 80% chance of going on ECMO.

He was born at Hospital of the University of Pennsylvania and transported next door to CHOP on 5-19-08. He did not go on ECMO, had his repair on 5-23-08, came off the ventilator on 6-6-08, breathing on his own by 6-12-08 and was discharged after 37 days in the NICU.

He is our CDH rock star!