We went to Nathan’s eye appointment at the Hospital yesterday. It doesn’t even seem possible, but his eyes are worse than 3 months ago. He is completely light perception only and that may be generous to say that. It was the first time his Dr. said that he does believe that he will go completely dark. Then we will have more issues with his body clock becoming irregular as he won’t be able to tell day from night. His Optic Nerve was more pale, which is a sign of more degeneration. At this point. We are just waiting on our July 7th appointment to see if the DNA tests revealed anything. Thanks for your thoughts and prayers. I think at this point we are just numb from this all.
Our 14 year old son has been diagnosed with Juvenille Batten disease. This is a very rare neurodegenerative disorder that is fatal. This is our journey.
I feel so bad about this. I knew his vision had changed but it is still hard to hear. My thoughts are with you guys. Tell Nathan “Hi” from me.
We thought so too, but always hold out hope that we may be wrong. Hope you are having a great summer. Take care, Stacey