Mighty Member since April 2015
We are Duncan and Lynsey, Ellie Mae (6) and Caleb (4) and we live in Leeds, West Yorkshire. On holiday in May 2011, Ellie Mae had an epileptic fit. Following this we had a long journey to diagnosis, during which time Caleb also started to suffer from epilepsy. We were told on December 20, 2013 that both kids have Late Infantile Batten Disease (CLN2), and that they are not expected to survive into their teens.