Hello All

Thank you to everyone for all the kind words, support and encouragement!!!!!

Today was a draining day, Wendy spent several hours with Ann Helms from the Charlotte Observer. Sounds like Ann is ready to write a story, however she is waiting for comment from CMS. We got great news from Bright Horizons(Brandon and Jeremy both went to School 4 from infant rooms to preschool rooms) and Dore Academy(Brandon’s 2nd and 3rd grade’s). Both schools are going to take Tshirts to sell for us! Thank you to Yvette, Margie and Suzanne for helping us!!!!!

Brandon and Jeremy are very excited to be going to Michigan on Thursday. Brandon was asking questions about the airplane tonight and Jeremy has packed and unpacked a suit case several times!!!


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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