Update - 5/2/00
With the sudden death of our son, Benjamin John, on April 26, 2000, I'm
having to rethink his website. I want to continue to be able to
offer hope to others facing the HLHS journey, even though our sweet Benny
died. The doctors believe Ben died due to a blood clot found stuck
in his aorta, which apparently cut of the food supply through the coronary
arteries to his heart. We don't have final results yet, but we are
hoping it was caused by a fungus that was found in his lungs.
Everyone is devastated, including his doctors. We were told this is
extremely rare. Once Ben got past his first six months and three
surgeries, our cardiologist told us he really thought Ben would make
it. So, for those parents out there facing HLHS, please don't give
up. Give your children the chance to fight this fight. Even in
the depths of our sorrow, we can honestly say we'd do it all over again
simply to have the precious time we had with Ben. He was more
precious than one can imagine, and to him, we will always be thankful.
Please sign our guestbook if you get a chance. Not only do all of
your well wishes provide us great comfort, but we are also printing all of
your notes out to keep in Ben's memory book. Thank you.