Jan, My heart and thoughts are with you. The best thing to do is get as much information on this disease as possible. A good resource is the "United Leukodystrophy Foundation" Adress: 2304 Highland Drive, Sycamore, Ill. Phone:1-800-728-5483. I am a nurse and I have taken care of three kids with leukodystrophy, two were siblings. Please get all the information you can and if you are still interested in my personal experiences, I will share them with you. I will be thinking of you.