What is Batten Disease video

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.

Advertisements
About

I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

Posted in Batten Disease, Uncategorized

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Previous Posts
%d bloggers like this: