Paul, these are the words expressed by those who have heard of your passing
Kind, remarkable, courageous, warm, incredible, funny, warm hearted, uncomplaining, good homoured, loving, special, best friend, a pleasure to know you, honoured to have meet him and above all the most wonderful, beautiful and caring son, brother and grandson.
You lived your life with dignity despite everything that you suffered. As your mother I lived every moment of your pain, by your side to the end. I was with you for your first breath and your last, but I was not ready to let you go. I am heartbroken to have lost one of the two best things in my life. I hope I made the right decision to let you go as the pain you were suffering was too much and the damage the seizures had done had taken you away from us. 
I am taken aback by the unexpected moments when your absence hits me. Ian says there are times he wants to tell you about something that only you would understand. I sometimes think I hear oyou calling me as you did constantly when I was not with you. I will be strong for Ian, I promise, for as long as he needs me. I will hold you in my heart, until we can be together again.