Monday, September 11, 2006

An Introduction

This is my son Nova.

He was born December 2, 2005 with
a Congenital Heart Defect.

When he was just 11 weeks old, he underwent open heart surgery to correct his defect. He spent eight hours in surgery, on the heart/lung machine, while the surgeon repaired his malformed heart.

Over the next six weeks there were several complications additional surgeries, and other procedures. Sadly, despite the doctors' diligent efforts, he passed away in my arms on April 6, 2006. He was just 4 months and 4 days old.

We are obviously devastated. He simply couldn't overcome the odds against him. He was a beautiful boy, so strong, and so inspirational. He was just learning how to smile, just discovering that he could laugh. I miss him desperately every day. And you see, Nova was not the only child that Congenital Heart Defects have taken from me. His sister Alexis (pictured on the right) died of a similar heart defect nearly 5 years ago.

People tend to believe that my losses are unusual, but they're wrong.
People think that Congenital Heart Defects are rare. They aren't.
Congenital Heart Defects are the nation's leading cause of defect-related infant death, and the most common of all birth defects. Nearly 40,000 children will be born with a cardiac defect this year, as many as 4000 of them will die. But doctors often can't tell parents about what causes these defects, or how to prevent them. There just hasn't been enough research, and unfortunately, there isn't enough funding to back the necessary research projects on this subject.

In an effort to change that, and to help other parents avoid the same devastating losses I have experienced, I've dedicated myself to raising awareness, and funds through The American Heart Association.

On September 16, 2006, there is a fundraising event called the Charlotte-Metro Heart Walk. It's designed to raise funds and awareness simultaneously by hosting thousands of walkers on a three mile course through uptown Charlotte. Funds go to cardiac research.

It is important to me that Nova not be defined by his death, but by the number of people who are touched by his short life. For that reason, I've created "Team Nova" and joined The Heart Walk in September. I’d like to invite you to help me give meaning to his 4 months on this earth by joining me in my fight against Congenital Heart Defects. My personal goal is $1000 $2000 $3000 so please, visit my "Team Nova" web page at

http://heartwalk.kintera.org/charlottenc/novasheart

and make a donation. That can be done either online through the website, or by printing a donation form from the website and sending a donation via postal mail to the address listed on the form.

If making a donation isn't an option for you, please, take a moment to post a link to this post on your blog or website, or tell someone you know who might be interested. Raising awareness is just as important as raising funds. As long as CHDs are unknown to the community, the lack of funding will continue to be an issue.

28 comments:

  1. I like the way you introduced Nova and Alexis. Very beautiful.

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  2. This is actually adapted from the letters I've been distributing to various organizations. I think the old post was getting ignored because people got used to seeing it, so I decided to make a new post.

    After the the things I've been feeling about Alexis lately, and having gone through her things and, well... I just wanted to include her in this post.

    I don't know if this post will make any difference in how many donations are (or aren't) coming in, but I feel better about this one.

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  3. It's nice to see the thermometer creeping upward again.

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  4. Erin, I can't remember how to use the Paypal thingy. Where is it on your page? ~ (wull, duh....)

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  5. Hi pepek! The button is to the right, just above the purple "Nova" ribbon. *hug* Thanks for using it!

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  6. You betcha. I see it now. Duh. Save one for me!

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  7. Oh, WOW! We are smokin'!

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  8. Got the book this morning. Thank you.

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  9. Looks like you might have to raise that goal once more before the walk... ;-) Gettin close!

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  10. This is fantastic, and I want a book! I'm writing myself a note to send a donation on payday (Friday). Good job, you.

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  11. Anonymous3:48 AM

    You better sign this copy woman! Wish I could have bought them all!

    magdala~

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  12. Magdala!
    I love you! I don't know what you'll do with another copy, but this one will be signed, guaranteed.
    *hug*

    All the books that were pending are going out this morning, I'm on my way out the door as we speak.

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  13. Please change your link to my blogspot, hon to:

    http://sparechangeandparadigms.blogspot.com/

    Thankies!

    hugs!

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  14. Depending on my work schedule, I might actually be able to walk with you, if you'd like that. I read about you and your angels on Gretchen's site, and this touches me, and I want to do all I can to help. Once I know more about my work schedule (we have several big projects in September, but I don't know the dates just yet) then I'll know if I can walk.

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  15. I know I already commented on your blog, but it feels rude to just leave this comment hanging..

    I'd be thrilled to have you walk with us, I'll be waiting to hear from you about it!

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  16. Yeah and make sure you sign your check!

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  17. Heavy heart reading about the loss of your baby daughter Alexis.Devastating.
    Best wishes w/ this project!!
    I came here, I think, via Cecilia's poetry site.

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  18. my heart goes out to you

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  19. Hi Erin, thank you for visiting my blog.

    I was so touched reading this post. You have experienced every mother's nightmare not only once but twice. You are a strong woman. I would like to contribute what little I can to your cause and will also spread the word on my blog. I don't know how much my small readership can contribute, but hey, we can try, right?

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  20. Jmom, thank you, I'd LOVE it if you'd spread the word, I appreciate any extra attention I can get for this cause!

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  21. Erin my condolences to your loss. I could not believe how much your story sounds like mine. My daughter Katie was born with a Congenital Heart Defect, She underwent surgery at five weeks and died. She would be 14 now.

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  22. erin im so sorry for your loss..i will definitely spread the word but i was so happy to see that the thermometer is doing great.
    God bless you and your family.

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  23. *I posted Nova's picture on my Flickr, as well as links to this site and the donation site. I hope it helps. I wish I'd thought of it sooner.

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  24. ahhhh...wow....God bless you, Erin...

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  25. ERIN! (sorry, excited over here) Your thermometer crept up to $2,510.00 over night! You're going to bust through the top of that thing!!!

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  26. Raise your goal. I know there not much time. But by the same reasoning you offered before it was full and then runneth over, this fullnes so to speak, may detour people fro donating. I don't know. maybe.


    I am so f****** pround of you and this. I only wish I could have contributed to this awesome effort. I am also overwhelmed by these so very good and kind people that have donated. This attributes to hope. I take so much more than just these blurry eyes away from here today.

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