Caernarfon family's anguish caring for son with rare disorder
A mum says she has to be "nurse, doctor and a physiotherapist" to her severely disabled son.
Hari Jones, six, from Caernarfon, Gwynedd, cannot walk or sit up, and has a life support machine that needs constant monitoring.
His rare genetic disorder has left his family near "breaking point" with his mum working up to 12 days and nights non-stop because of a lack of support from the health service.
Hari's parents said they were told he would get a full care package, but there have been "ongoing issues".
Betsi Cadwaladr health board said due to Hari's complex needs it would take time to recruit and train staff.
