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:



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


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