Ryan's was born after a normal pregnancy but almost immediately it was obvious to doctors that something wasn't right. He had a lot of 'genetic markers' but nothing that indicated a specific condition.
As he grew older, he never met any milestones and epilepsy was officially diagnosed at 7months old. It was apparent that he grew much faster than other children and repeat brain MRI's showed major problems with his white matter.
Despite all this, he was a pretty healthy little boy until March 2011, just after his 8th birthday. He spent almost 8 months in hospital - he stopped tolerating feed and we lost control of his seizures. He was very ill for such a long time but he came home with his stomach on permanent drainage, a permanent jejunostomy, a fundoplication and a supra-pubic catheter in his bladder.
He managed only a few months at home and has spent most of this year back in hospital. His overall deterioration has continued. His large bowel has stopped working and he is going to theatre this week for more bladder and bowel surgery. He is in significant amounts of pain due to his scoliosis and is on regular and breakthrough morphine.
Despite all this, he is such a happy boy and loves getting attention - especially from the ladies :)