James was born perfectly healthy and met all his milestones but at 18 months he began to have seizures. As the seizures increased James began to lose skills. He stopped talking, walking, playing with toys, sitting ,rolling. We were diagnosed with infantile batten disease when he was 22 months old. It's a rare neurological condition which has no treatment, no cure and is always fatal. Where were told he would die before he was 5 years old but is is 7 this year!!
James now is completely immobile, blind and tube fed as he is unable to swallow. He is totally reliant on us for everything. He still has seizures everyday which sometimes don't stop and require an ambulance. He is regularly in hospital for chest infections also.