Neurology

My daughter is 20 months old. She has been having seizures since she was 10 months old. No one believed me until i taped them. She was then referred to the urgent neurology clinic. She was not put on medication to control the seizures until she was 12 months old. i was told shes fine unless they last more than 4 minutes then take her to the hospital. She was booked for an mri but i was told she simply had epilepsy and the mri would be normal. Well they found massisve deteioratation in the white matter, She was immediately taken to surgery and had a spinal tap and muscle and skin biopsy. They were testing for canavan disease and sent it to the U.S. A Gruelling wait but it came back negative. She just started walking about 6 weeks ago. The doctors are telling me I am going to lose her. She was just examined and they are now testing her for leukodystrophy. Her next MRI is not until jan 2011. I am on a rollercoaster, I am not sure what to do next to get her the  help she needs.