Smiles, Laughter, Tears: Heart Walk 2011

Ethan 1 hour post-op open heart 6/2005

Ethan 6 days post-op open heart 6/2005

It's that time of year again, the AHA Heart Walk is right around the corner. We will again be walking with CHD Families, in honor of all our kiddos affected by congenital heart defects.

This year is different for us though, as Ethan has always been a 'heart kid' without the typical problems of a 'heart kid'. The majority of his struggles in the past have been because of his Chromosomal anomaly 18q-. Yes, he had open heart surgery at 15 months old, but came through with flying colors and was home 9 days post-op, meds for a few months, follow ups for life, but nothing like the struggles some of the kiddos I know have gone through.

This year is different-Ethan is in heart failure and no one knows why. His pulmonary valve is leaking greatly, causing the majority of the failure. This valve was created 5 years ago during his open heart repair by opening his pulmonary arterty to allow for greater blood flow-due to the size and constriction it was causing, and a 'flap' was made to work like a valve. We were assured it would continue to work for Ethan well into his late teens-he is almost 5 years out from that surgery and it is already failing.

So why is this walk even more so important to us? Because all the funds raised through the CHD Families team members will stay right here in KC to help figure out why something like this happened to Ethan. To hopefully help answer some of the questions all heart parents have-

why?

how?

and can it be fixed?

Unfortunately for too many parents I know, those answers will come too late. Too late to help their child. But it's not too late to help so many others. Please consider making a donation to help answer those questions, because though too late for some, it is only with those answers that we will someday be able to put an end to precious lives lost to congenital heart defects.

No donation is too small-feel free to mail a check made out to the AHA to me-email me and I will send you our address karawley03@yahoo.com

or donate on our online page at:

http://heartwalk.kintera.org/kansascity/ethanrawley

Thanks to those who have already generously donated-Grandma Sharon and The Clapp Family-thank you so much for helping us reach our goal!!

I included some of my favorite pics of our boy below-all of these were taken by a dear friend Brandi Wisdom of BNW Photography-friend her on FB and see all her gorgeous work! The very last picture was taken at our home-Ethan had been in the hospital and had just come home-she didn't want to mess up his routine, so she and her husband packed up the stuff they needed and headed to our house! The middle pics were taken in the playground in front of Children's Mercy because Ethan was IN the hospital at the time we were scheduled to have our family photos taken, and instead of rescheduling-she packed up her stuff and headed down there to take our pics. She has always been so patient and wonderful with all my kids-but especially Ethan and I just had to share these with you.

How can you look at any of these pics and NOT want to donate to help him and all the other precious kiddos out there just like him?????