We have had a couple of kids with tuberous sclerosis. Two were sibs, Mom did not know she had it until the second child got diagnosed. Her cousin came in with a child who had it also. There was one other child who likely had the diagnosis, she had greater than 30 cafe au lait spots, low set ears, developmental delays.
The problem with this disease is you only need one gene to pass it on. You can't guess how bad off your children will be. All of these children were delayed, the first two severely.
Good for you in doing so well. I wish you luck in your endeavors.