Friday, September 15, 2006

Stepping Out

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

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.

posted by Erin @ 11:59 PM   3 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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