Leukodystrophy Websites

I have recently found a couple of really great sites dealing with Leukodystrophy. A couple of days ago I was looking online at wheelchair options for Bryce and stumbled onto this one...http://themorganproject.org/index.html The other one http://www.ulf.org/ was found by one of Bryce's therapists and she brought me some information from it. They are both really great and full of information. The thing that I have found so wonderful about the ULF website is that they have a support community where we are able to talk with other parents who have children that have been diagnosed with the same thing Bryce has been. Although it is terribly sad to read about other children and parents who are suffering, it has been kind of a relief, or maybe burden lifter (I guess that is what it is I feel...it is hard to explain) to see that others are going through this same thing and that there are people out there who are trying to find some answers and hopefully a cure. It's nice to be able to talk with people who know exactly what we are feeling. It's so strange to be going through this. It's like a whole different world which feels very lonely at times. Up until now, we have not known anyone, other than his doctor who has seen it a little bit,who has worked directly with children who have leukodystrophy. Even Bryce's therapists...not one out of all 6 have ever worked with a child with leukodystrophy before and some of them have been working in the field for over 20 years! It is so encouraging to see that people really are working on finding answers for this terrible type of disorder. It gives us new hope that maybe someday, someone with actually find a cure for the leukodystrophies! I really hope it is soon! Also, we found out that there is a conference held each year for families that have been diagnosed with undiagnosed leukodystrophy. It is held in DeKalb, Illinois each year and has doctors from all over the world who specialize in the leukodystrophies who come and see children like Bryce and help in any way that they can. Unfortunately, the conference is held in July so we have missed it for this year, but you better believe that we are starting to save money and make plans for next year! I so wish that I would have found out about it sooner! It would have been so great to attend! Oh well, next year! I also intend on doing a lot more reading and finding out all I can about this. One thing I am so thankful for is that we have the understanding of the gospel. It is evident through so many of these parent's writings that they do not understand the whole picture. Although I don't totally understand it either, I know that there is a plan and that the Lord is fully aware of what is going on, even when we are not.