This is a very hard time for us and this isn’t an easy subject to write about so here we go…

I finally received the call we have been waiting for from Dr. Kao. Konnor’s tests confirmed that he actually has Lesch Nyhan Syndrom not Cerebral Palsy. It is a very rare genetic disorder caused by a mutation on the X chromosome.  You can find more information about it under "What is Lesch Nyhan Syndrom".  This has been devistating news to be told and I think the only thing that has made it worse has been that we aren't together as a family right now.  I believe our trip here in Michigan will still be benifical to Konnor but can't I want to be home so bad right now. 

I will now try to find out as much as I can about LNS as I can, and try to get Konnor into see the best doctors and receive the best care possible.