Hi Susan,
WOW, Your story has just shocked me. It is quite common for TCS to be missdiagnosed but normally with Golden Hars syndrome. I don't know much about Charge Syndrome, But for your family to have lived most of your lives thinking David would die at a young age must have been hell.
Caleb my 15 month old son is fifth generation with TCS. all up that is seven that have it and possibly more that were never diagnosed. My GreatGrandmother had it. My Pop (We don't know if their brothewrs or sisters had it, or if my great grandmothers parents had it) My pop and Nan Had 2 with TCS & 2 without. My parents had 2 with & 1 without. And last is Caleb.
As you can see TCS passes through the genes. It is a dominant gene which means that if one parent has it and the other doesn't then there is a 50% chance the children will have it.
Treacher Collins it's self doesn't give an intelectual impairment most with TCS are of high intellegence. But there is just as much chance of having an intelectual impairment as any one else in the world.
There are totem poles by the Inca's With the carved heads of people with TCS and they were regarded by the Inca's as Gods. So TCS dates back a long way, and as I see it means that TCS will be around as long as the human race exists.
That's a few little Facts I thought you might like to know.
So Yes TCS people live full happy lives, I can't say there normal lives because of all the different medical problems that are associated with it.
Some of them are:
Microtia (no ears)
Cleft Palate (Missing roof of mouth)
Small Jaw (Can result in Tracheostomy)
Missing bottom eye lids
Missing tear ducts
Slanting eye's
Missing Cheek bones.
Caleb Got all of the above. I got all but the Microtia, Cleft Palate, Tracheostomy.
I hope you will write again and ask any questions or just chat.
Rebecca
Sydney Australia