My 6 year old daughter was diagnosed with metachromatic leukodystrophy. This is like muscular dystrophy in the brain. It's a white matter disease that will cause her to lose all muscle and brain function eventually. The earlier you are diagnosed with this disease the faster it progresses. My little is girl is turning 7 on April 27th. We have watched her slowly deteriorate this last year. She has a hard time doing just about everything. The doctors say if we don't get a genetic test done, we don't know how bad it is or how long she has left to live. Unfortunately our insurance will not pay for it. There is a small possibility that it's not leukodystrophy, but we need this genetic test to find out. If it is something else, it could be treatable, and my princess could live a full life but be disabled. The leukodystrophy is a death sentence that could take her from us in as little as 5 years. Everything hinges on this genetic test.
