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that is awesome news. I know how it feels, my step daughter was born with the main artery formed on the wrong side of her heart. She has had 3 open heart surgeries so far, and is facing 1-2 more as she goes through adolescence to re graph the area as her heart grows. She is now 10 years old, and a very healthy tween... my prayers continue to be with you and your family. they are very resilient and strong, these kids. she is currently under no restrictions, so yes, there is a light at the end for them.
A great group to sign your child up with is the Make A Wish group. there is a 3-6 month waiting period, so I would wait till they are at least 5 or older before doing so. Mine is a wish kid, and they gave the family a dream vacation in Florida last year at Give Kids the World Village in Orlando Fl. It was an awesome experience my wife and I could never have provided for our family otherwise. hxxp://www.gktw.org
make a wish grants whatever wish the child makes, and provides it beyond the child's, or your family's wildest dreams. we got immediate access onto every ride in disney world, universal studios, sea world, without standing in any lines, and they even had the disney characters meet and greet with the kids personally at the village with pictures and autographs. Even without the amusement park tickets, there was enough at the village for us to do where we could have stayed right there for the entire week and never ran out of things to do. they even gave us $1500 spending money for souvenirs on the trip, provided all meals free, and multi day passes to each park. I highly recommend it for your child, and highly recommend anyone with the money to do so to donate to these groups.
Also, caring for a child born with a heart condition can be difficult financially, missing work and such. Apply for Social Security disability benefits on your childs behalf if you are in the US.
I mention these things to you cause when we went through this situation, we didn't have anyone to advise us on where to turn, and we didn't think of the soc. sec. thing until 2 years and deep debts later. In this economy, everyone can use a hand up, especially in a situation like yours.
My prayers and that of my family are with you and yours.
-OcO-
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