ann hykin
Our three year old grandson started sings of deteriorration at the age of 18 months. He has lost a lot of motor skills and can no longer process mental conversation. He has seizures. That is how it started. They have tested him for everything and have now done the third test to see if it is Batten. It is the hardest thing we have delt with in our family. He is a beautiful child and we are loosing him before our eyes. The only help we have found is in our strong christian beliefs. If you have a pastor or someone you can cancel with that might be helpful. There are books to help parents of dying children. I just keep praying they will come up with a cure for batten. There was a whole t.v. show on this I think it was 48 hours. Did you see it? I will pray for your peace.Also there are sites on the internet and chat rooms for parents of batten disease children. God bless!