Sunday, May 24, 2009

Jaxson's Jog

Hi all,
Just a quick update to let everyone know how the event went yesterday. We have over 50 race day entries adding to the almost 90 or so folks that had pre-registered for the race. With race registrations, the proceeds of the Chinese auction and the donations made directly to Global CDH making the total donation over $2500.

It was great to meet the founders of Global CDH who drove here all the way from New Jersey! We had a great time getting to know them and learning about their organization. Including Jaxson there were 5 CDH families present at the race. Meeting them and helping to share their story was a truly amazing experience.

I'm thrilled with the results of the first race and already looking forward to next year's race. I hope we can triple the registrations and continue to raise more awareness of CDH.

I'll be posting the pictures that our friend Kari of Eventum Photography took of the entire day. So, hopefully I'll get those up soon. Be sure to check them out at www.jaxsonsjog.com.
Happy Memorial Day weekend!!

Sincerely,The Mayers
Posted by Sarah and Barry Mayer at 6:11 PM 1 comments

Thursday, May 14, 2009

Count down to Jaxson's Jog

I can't believe that Jaxson's Jog is only days away - May 23 is the big day! I'm so anxious for the big day to arrive. I am working on media attention this and next week and really hope that some local Pittsburgh stations and papers will pick up the story. It is so important to me that Jaxson's Jog spread the word about CDH.

I sent a news release this morning out through a free wire service called PRLog.org. Here's the link in case you're interested: http://www.prlog.org/10236499-jaxsons-jog-event-spreads-word-about-congenital-diaphragmatic-hernia-in-pittsburgh-pa.pdf

I'm also excited that we will have several CDH families present at the race. It will be so great to have them be a part of the effort to spread the word.

On a Jaxson note, he will be one year old on Tuesday, May 19! It's hard to believe it's been a whole year, but what an amazing year it has been. We are so lucky to have Jaxson with us and in such great health. I cherish every moment with him and am extremely blessed and proud to be his mama.
Posted by Sarah and Barry Mayer at 8:25 AM 1 comments
Labels: ,
Subscribe to: Posts (Atom)

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!