This video was done two years ago and it is an excellent crash course in both the medical issues and the emotional issues that parents go through dealing with Batten Disease. Marcus and Sue are the two parents interviewed and they really hit the nail on the head in regards to the emotional ups and down.
Also wanted to mention the caregivers of Batten children and thank them as well. They get attached to our kids, become second families and feel the emotional ups and downs as much as the biological family does. We couldn’t do it without them!
Thank you for reading and please share our posts with family and friends.