Well, it has been confirmed by Dr. Narayanan, Bryce's little sister will be joining him in this mystery disease. We saw the neurologist yesterday and sure enough, Annalise seems to have the same thing Bryce does. I just wish we knew what IT was! Some specialists still believe it is some unknown type of Leukodystrophy while others believe it is some totally different type of genetic recessive disorder. We are working with Dr. Narayanan to get some genome sequencing that will hopefully help us find out what is causing the problem. We have been accepted into a research study which will hopefully help us find some answers. However, it may take years to have any. So, we are also looking into the option of doing the testing on our own. Dr. N said that it will cost about $10,000 to get it started. He is going to look into the how and we will be looking into doing some fund raising activities to earn the necessary money. Luckily we already have a couple of ideas and some people who are already on board to help us out! There are so many good people in this world! We are so grateful for all of you!
It is so hard to watch our kids going through this and a little overwhelming, OK, a lot overwhelming as I think of what is ahead of us. I already feel so tired and stretched to my limits, but I guess the Lord knows something I don't! I am sure not looking forward to watching what my little girl will have to endure in the coming months though. It makes my heart hurt!
2 comments:
I am so sorry to hear this. You all will be in my thoughts and prayers. Please let us know if there is something we can do to help. Finances are not good for us right now, but if there is anything else, please let us know.
Bryce's Fair God Parents
Thank you Jeff. Everyone's prayers are definitely helping us through this. I hope you and your family are doing well.
Post a Comment