At the CHD Support group on Sunday we met a little boy named Alyc and his mother Amiel from Alaska. He has HLHS, just like Pat. You can get a pretty good idea of Alyc's personality - at least what we saw of it - from his picture. He was an energetic, impish, and totally charming normal 2 1/2 year-old boy.
We were delighted to meet them, and are so encouraged by Alyc it's hard to describe. They were down from Alaska to check out something that they thought might have been an alarming development, but turned out to be nothing but good news. We are just beginning to understand the worry that brought them all the way here from Alaska, and the relief everyone felt when everything was OK.
If there is anyone who has a boy about Alycs age with HLHS and would like to get in touch with him and his parents - especially if you live in Alaska - just contact me and I can get you in touch.
Yep, meeting other kids with the same CHD sure does bring hope, doesn't it? It's one of the things that makes the CHD group such a good thing. (I was on an incredible high when I learned that the Olympic snowboarder, Shaun White, has the same defect as Gabby. Shows what CAN happen.)
ReplyDeleteYou guys will be in my thougts today as the induction process starts. I will check in often to see how things are going. And, the other post is right, there are places at Children's where you can have internet access. Good luck.