We just received word that the updated news story on Nathan will air tonight at 6 PM on 9 News (NBC). Once it airs, I will post a link for those who are not local.
Thank you all for your love.
Stacey
Our 16 year old son has been diagnosed with Juvenille Batten disease. This is a very rare neurodegenerative disorder that is fatal. This is our journey.
Nathan's Batten Battle 
I had a niece with battens disease. She was diagnosed at 3. She died at the age of 8. I know my brother and sister in law had to live with this. It is genetic, found out that brother and sister in law had the same missing gene, that’s what makes it rare. They also had a son who was not affected. He was tested, he is not even a carrier, so he won’t pass it on. My prayers go out to you, because I know what you will be going through
Thank you very much, we appreciate the prayers.