A family has reached "breaking point" as they wait for a proper package of care for their son who has a rare genetic disorder.
Six-year-old Hari Jones has X Linked Myotubular Myopathy (XLMTM), a rare genetic neuromuscular disorder that means he spends all his time connected to a life support machine. Hari, from Gwynedd, Wales cannot walk or attend school, or even sit up and he must be monitored constantly in case the tube in his throat blocks.
Hari stayed for at Alder Hey Children's Hospital on and off for four years, though since returning home due to his complex needs his parents have had to step up as his full time carers due to what his dad, Michael, called "poor management" from the local health board. The family were even offered care three hours away from their home in Chorley, the Mirror reports.
