I like the idea of a tree they could plant in their yard or the bench/brick idea.
I must also say, we have friends whose first child was born with similar issues (sorry don't know the name of the exact syndrome) and was expected to die within hours of birth. Funeral arrangements made, etc. Their son is now, amazingly, in his early 20's. They have written the books with the docs as they go along. I can only say it's an incredible testament to the Doc's and obviously the parents of this child that he is still here. It's been more than a challenge for them through the years but they have taken it all in stride. They now also have two other healthy children as well. Don't give up on this little angel yet!