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Tuesday, January 12, 2010

Giving back, especially to The Trisomy 18 Foundation

I subscribe to Google alerts for Trisomy 18 and Edwards Syndrome. These send e-mails to my inbox with stories and blogs where those words are mentioned. When I see the blog of someone who has had a child be recently diagnosed or are waiting on a diagnosis, I visit their site and offer support.

On Babycenter, many people know I have experience with this diagnosis and know that I'm more than willing to share my story and offer help to those going through it. As emotionally draining as this might be, I still feel as though I have to do it.

I didn't have anyone in real life who had gone through it, so I depended on my Internet friends. Not all of them had experience with Trisomy 18. Some had experience with other chromosomal disorders; others just had experience with a positive AFP test or even a second trimester loss. I can't even begin to tell you what their support meant to me, and I guess by supporting the newly diagnosed, I am just paying it forward.

I remember the pit in my stomach when Dr. McGowen called me to tell me about the AFP test. When she said Trisomy 18, I said, "That's the one that's imcompatible with life, right?" Of course, she said it was. Now that I know more about it, I know that it's not always incompatible with life, just incompatible with long life.

While waiting to do the amnio and waiting on the results, I remember thinking it couldn't happen to us, that these kinds of tragedies happened to other people, not to us. We had had our share of hard times, but nothing like this. It just couldn't happen to us. I thought this, even though in the back of my mind, I knew Jenna was going to be diagnosed with it.

I was in a constant state of panic during that time. I didn't want someone to tell me everything would be Ok. I didn't want anyone to tell me it wouldn't be ok either. Not only did I rely on my Internet friends for this, I also found wonderful support through the Trisomy 18 Foundation, founded by Victoria Miller, after she lost her son.

Now, the Foundation needs our help. Back in December, the Trisomy 18 Foundation won $10,000 from the Chase Giving Program, which meant it has the chance to now win $1 million dollars. In order to do so, people have to vote for the foundation. We need your votes. So much could be done to help those parents who have received a diagnosis with this money.

Voting starts Jan. 15. Every child who has ever been diagnosed with Trisomy 18 deserves a vote. All those children who are defying the odds and are thriving deserve a vote, as do all the ones who have gone on to a better place. Please, please take the time to vote, in memory of those children. And, since most of you know me and have been following my story for a long time, do it for my Jenna. She deserves it.

Here's the link to vote. Just three more days until the voting starts and remember, every vote counts.

1 comment:

Victoria Miller said...

Thanks so much for your support Jenna's Mom!

Victoria Miller
Executive Director
Trisomy 18 Foundation
Jan 15th-Jan22nd