Cephalic Disorders

[galmoy]

Our beautiful daughter now 6 years was born apparently normal. As time went on her developmental milestones were delayed, including speech. By 2 and a half she had been diagnosed with a mild learning disability, global developmental delay, gross motor and fine motor skills problems and ' a cluster' of emotional/behavioural difficulties. Following onset of seizures - myoclonic epilepsy - she was diagnosed with Double Cortex Syndrome, sometimes referred to as Liccencephaly X Linked. We live in Ireland and although medical staff have heard of this condition nobody is in a position to provide us with anything more than medical information. We would love to talk to other parents with a child, older or younger, or indeed an adult with this condition so that we can prepare for the future. We have lots of questions!!!