Getting caught up…..

Once again I have been slack in posting new entries here, I will try to improve the turn time between postings.   The first few weeks of school have been relatively uneventful, we continue to see Brandon slow down, occasionally taking naps, getting tired easier and really fixating on things like his Beyblade games, Pokemon games and he loves to listen to audiobooks, particular fiction tales like Erin Hunter’s Warrior series and lately it has been the Owls of Ga’Hoole.  Jeremy has done well in school so far, he has a great group of kids(one of his classmates Melia held a bake sale this morning during our community garage sale with proceeds going to BDSRA) and he enjoys school.  They have started the fall season of VIP soccer which is good and bad.  Jeremy really had a tough time this fall asking to play “real” soccer.  We have a surprise for him soon on this request.   Thanks to Terri Bunn the boys VI teacher for forwarding information about a flag football camp for kids with special needs on Oct 2 at University of North Carolina-Charlotte.  They are very excited about attending this event.

I recently attended a community support event at Wachovia that benefitted Taylor’s Tale.  We had a great time and raised some money to support a great organization.  I have added a tab on this site for 24 Hours of Loopy for Batten Disease Awareness.  We hope to have more information for you soon once we have a site confirmed.   We are also seeking sponsors for ourboys 5k 2011, if you are interested please let me know.


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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