Undiagnosed Leukodystrophy

My youngest daughter, Hailey, was diagnosed with having Leukodystrophy in February of 2007, but to date as still gone undiagnosed to which one she has. She has been tested for 33 of the 34 different types with the exception of CACH Syndrome. She has cerebral ataxia, dimetia, she has problems walking and must use a wheelchair for extended walks, she has cognitive problems in school, she can barely write her name and that is all. Her speech seems to be slipping a little so much that even my wife and myself have to ask her to repeat herself because we cannot understand her. She has recently taken to vomitting every night. She will be 8 this month and she still appears to be a 4 or 5 year old in size, she only weighs about 45 lbs. Although she has this horrible condition, she does not let it slow her down any at all, and she is my main inspiration for strength through these rough times. I really would like to hear from other families in this same situation, especially from those that have older siblings like mine, 16 and 11. Maybe we can share our stories on how to cope and how to help our children bear this unwanted weight. Would love to hear from all.