This is the first family picture we have had in quite a while, it was good to see Uncle Mike, he surprised us with a quick trip down, leaving on Christmas Day to return to MI. This picture was taken after the present opening swath of destruction had been cleaned up!!! Grandma and Grandpa visited our genetic clinic in Charlotte today to get their blood drawn for carrier testing of Batten. There are implications down the road for cousins and second cousins depending on which side or both sides of the family that the missing gene was inherited from. We will keep you posted on the results.

Brandon and Jeremy were a little on edge visiting again(they hate shots and needles with the Batten illogical compulsivity) but were happy that they were just sitting in the waiting room. Grandma and Grandpa took them to Target afterwards for Pokemon cards as a reward, and then we did dinner at Chuck E Cheese, I have already taken my 3 Tylenol to combat the headache.

Hope you all had a wonderful Christmas holiday and we look forward to seeing and talking with you in 2008!!!!!


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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