Dorothy and Rose were 10 and 12 when they were diagnosed. BOth girls are Batten Angels Now. Karen has been our Chapter President since 1997. She was our chapter sec./treas for six years before that. She also served on the national board.
Westley Powell was diagnosed when he was 3 years old and is now a Batten Angel. Laurie is our Chapter Sec/treas. and Steve is our Vice President. Dustin is one of our Adult SIBS. Laurie also served on the National Board.
Hillary and Garret Jones were diagnosed when they were 7 and 8 years old. THey live in Jacksonville Florida with their mom Debbie and stepfather Fred Mata and brother Brett.. They also have a stepsister who lives in New Mexico. Fred presents batten disease at the yearly CFC campaign for his company and Debbie is doing some fundraising in the Jacksonville area. Thanks Fred & Debbi for all your hard work.
