It’s been a while since I posted. We have had our ups and downs in the last couple of weeks. This picture was taken with two throws given to the boys by one of our “guardians” as I call them. Susi Norfolk in our neighborhood had a party where she sold these incredible throws. They come from a company called The company and it’s owner donate a throw to children with life threatening conditions for every 5 throws purchased. Typically the throws go to children in children’s hospitals, but Susi asked if she could give them to Brandon and Jeremy as well as another child at WR Odell with a medical condition. Long story short here are the boys being presented their new throws. They are sooooo warm! Thank you Susi!

We have also had to struggle with behaviors from both boys particularly Brandon. Brandon has shown signs of aggression for very minor things and has gone as far as to tear up the shades on his bedroom window and even hit Wendy one morning. Both incidents started over minor things not going “his” way. Patience and flexibility have truly become important. We have learned to pick our battles and not push things. Jeremy I think sometimes follows his brother’s lead, but will have temper tantrums where he will just cry and scream for 20-30 minutes, and then be fine. Oooooh what a wonderful disease!!!!

Last Friday Ms Bunn(VI) and Mr Ian (O&M) brought Brandon and Jeremy to lunch at Wachovia with me and Wendy met us. The boys love to come to my building and Brandon amazes me with what he remembers. He realized when we were looking at a set of vending machines that they had switched out a Coke machine, he hasn’t been there in months! However he couldn’t remember what he had for breakfast that morning.

We still have way more good days than bad, it’s just the bad days are becoming larger in nature. We have to thank the teachers, staff and Brandon’s aide Lisa at school. They have become very good at heading off problems before they become bigger problems and have worked with us to make things as stress free as possible for the boys.


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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