Batten Breakthrough

and not in a good way.  Brandon had a seizure today, on a day off from school no less.  He was playing a video game and just kind of rolled onto the floor curled up into a ball and started snoring and drooling.   Luckily Stephanie(one of our caregivers) was right there and there really wasn’t a chance to hurt himself, but he zonked for about 30 minutes and when he came to he was very out of it.  Eyesight was completely black, very fidgety, wasn’t sure where he was.  We finally got him calmed down enough to agree to listen to the latest Owls of Ga’hoole book which I quickly had to download from Audible.  Good news is he is back to normal this evening chattering away.  He has been asking questions about what happened, where he was, why he was laying on the floor.  Makes me sad.


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.

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Posted in Batten Disease, seizures
4 comments on “Batten Breakthrough
  1. Eric says:

    I love you Chris. Stay strong. My prayers are with you.

  2. Malinda says:

    This breaks my heart! I miss the boys so much. I think about them and pray for them all the time. I love you guys very much. Hang in there those boys love you and wendy to pieces!

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