Saturday, May 27, 2006

Stepping Out

When you have a child with a serious health problem, you tend to do a lot of research, learn what it is that you and your child are up against. Understanding helps alleviate the fear of the unknown. When you have 2 children born with heart defects that prove to be fatal, not only do you learn about the defect itself, but you want to find the causes, the statistics, everything about it - you crave all the "why"s. Since Nova's diagnosis, birth, hospitalization and death, I have searched out and read more articles, memorized more statistics than I ever cared to know.

Right now, as things stand in our present. 1 in every 100-125 children born in the US will suffer from some form of congenital heart defect. That's approximately 35,000 to 40,000 children each year. Congenital heart defects are the #1 most common birth defect, and the leading cause of defect-related infant death. Around 4000 children die each year from a CHD. Actually, twice as many children die from congenital heart defects than die from all forms of childhood cancer combined, yet, congenital heart defect research receives about 1/5th the funding that pediatric oncology research receives. In the vast majority of cases, the cause is unknown, there are no steps for prevention, and there is no cure. That is the current future of our children.

I want to do my part to change that future. My life has been, as most of you know, deeply impacted by this lack of awareness and research.
In an effort to stop other parents from losing children, I've decided to participate in the Charlotte Metro Heart Walk 2006 on September 16th to support awareness and research of Congenital Heart Defects. I'm aiming to raise $1000 $2000 in donations. If you'd like to support my effort, you can donate online at:

If you're interested in donating, but online donations aren't your cup of tea, you can still help by printing out a donation form from the above link and sending it with a check, directly to them. It isn't required by the AHA, but I'd really appreciate it if you'd put "In Memory of Nova LeClair" in the memo slot.

If donating isn't an option, then please, take a moment to post this link on your blog or webpage, because only through raised awareness can congenital heart defect research get the attention and funds it needs. I want a brighter future for our children, for my children's children, and for yours.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
- Margaret Mead

I am only one; but still I am one. I cannot do everything, but still I can do something. I will not refuse to do the something I can do.
- Helen Keller


  1. This is so very cool, E. I hope that you meet your goal! What's the deadline for getting pledges in for you?

  2. I am not only going to meet that goal, I'm gonna kick that goal's ass!

    The walk is September 16th, so donations can be made anytime between now and then.

    I'm actually considering upping my goal... I'm feeling awfully confident today lol.

  3. Cool...I'm all over it (when I get paid :-P)



  5. There's months till the walk, so there's plenty of time to get to donating. No rush! And James, absolutely you an call me sis - and almost anything else you want ;)

    Love you guys!

  6. *muah* and all that mushy stuff! We love you more!!!

  7. You should definitely UP your goal. (Maybe 10K?) This is a wonderful thing you're doing, E.


    I'm going to post a link for this on my site too, k?

    Love ya!

  8. um... how do I post date a post?

  9. when you make a post, at the bottom, it says something about "post and comment options" or some such thing... click that and change the date to whenever you want the post to finally start moving down

  10. Woah... I just read the earlier comments... TEN GRAND? um, I'd LOVE to raise that kind of money, but methinks I won't set myself up for the crush of failure ;)

    And yes, definitely link to it, I'd appreciate it very VERY much!

  11. I kept going back and forth from this comment window to blogger. Back and forth, back and forth, trying EVER so hard to find out WHAT you are talking about.

    Well, I finally figured it out!

    (THANK YOU!!)


  12. I also posted a thread for you

  13. Question: does the little thermometer you have posted here update automatically, or will you have to update it manually?

  14. The thermometer is a screen shot from my donation page. It updates automatically there, but I have to update it here manually. Lol Eve, thank YOU!

  15. Thanks -- just wondering if I should bookmark the donation page so I don't look like the stalker I am.

    I'm working on my scrolling Sept 15 post right now -- busy day -- and hope to have it up very soon. If even one of my linky-pals is moved to help, I will be so glad.

    It's so cool that you're doing this. And accompanying those parents at the hospital -- wow. Huge, Erin.

    Okay - skittering back under my rock now, but ever admiring, you know :-)

  16. erin... thanks for this call to sensibility and personal worth...

    so many issues tangled up here... my father, who died at 71 years of age of a supposedly congenital heart problem, two of my three daughters who have had me on tenterhooks because of the same, but are thriving in ways unimagineable and unsuspected...

    i applaude your initiative and search for miracles which do exist, but which i don't always understand or see in the ways they were meant, for the world is a strange place and the creatures that populate it even stranger...

    keep well, be strong and let yourself be heard, triumphant and vulnerable as must be... i'm with you here, sincerely...

  17. Some time ago-I wrote a poem that deals with the subject matter directly responsible for the unique bond women like you and my wife share. I have posted it on my brothers website-and I would like for you to read it. Unless I miss my guess-you will understand it fully.
    Just go to the page marked "Ineffable"-then scroll down to "Prayer of Knowledge"

    Loving you from here-
    Yours for now,

    P.S. Let's see some naked shots.

  18. lmao Keenan, I believe whole heartedly in this charity - but not enough to get naked for it!

    I'm on my way right now to read the piece. I'm sure it's wonderful, because you are.

    Love you, and Kriss, and Quist ;)

  19. The little red marker keeps going up and up and up. That's awesome, E. We're all proud of you. HUGS! :-)

  20. Um.. so, you never did update us on that meeting. Or did I miss it? Or was it not yesterday Monday, but like... next week Monday? Oy-such confusion!

  21. lol Eve, that's next Monday - 8am ... in my favorite coffee shop in the whole wide world that I haven't been to in something like 4 years. Can't wait to have the caramel capaccino frosty thing that I can't remember the name of!!

    Told ya, it's been 4 friggin years!

  22. Anonymous2:29 AM

    Hi it has been awhile since we used to read each other's poetry, but I wanted to tell you that this is a very touching story and I am glad I found your blog. I wish you all of the luck in the world in reaching your goal. I hope you and Vickie and your family are doing well. I married a girl from Argentina that I met in the chatroom at Moontown, and in just our first two years of marriage we have gone through the tragedies that I think all of us face in life. My wife and I faced a tragic late term miscarriage of our baby girl in a small town in West Texas. We are trying again, and I hope we can be as fortunate to have as many beautiful children as you do.

    Brad Andrew Davis

    Los Angeles, CA

  23. Brad. Wow. I don't know what to say. SO happy to see you again after so long, so happy for you about the marriage! And so very sorry about your daughter.

    Email me, let's catch up and talk and stuff?! *hug* I just can't believe you're back! Just poof you're here.