Attached is the link to the news story that aired today. Thank you for telling our story
Boy slowly going blind finally has a tragic diagnosis
(Sent from 9NEWS)
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.
Hello,
I just wanted to let you know my young cousin lives in West Harrison Indiana and she was diagnosed with Battens disease as well. She was a beautiful fun loving 7 year old and it’s nit fair that her life was tu4ned upside down. She is now 15 and a sophmore in highschool. She is in the marching band,choir and a member of the archery team. My Aunt and Uncle ( her parents) have traveled the world to get answers on what the disease is and how rare it is. If you have any questions olease let me know and I could put you in touch with them.
May god bless your little man.
Jason
Thank you for reaching out. I would love their information. We are always looking to connect with other families. Happy Thanksgiving