Thank you all for your kind words. I've not been in touch with Billy since I was 12 y/o- geographical distance. He's my 2nd cousin. My Grandmother's youngest brother's son. From what I can glean, he may be a 4/4. This is NOT early onset. I'm working on getting him on board with the Buck Institute intervention. He was the cutest little boy- all scrappy, wiry, chestnut hair, freckles; a Tom Sawyer type. I pray he'll comply and find relief.