'I don't think he really understands; I feel all his fears as well as my own.'
'My son has cerebral palsy, epilepsy, asthma, hydrocephalus, and he's blind – that's all."
With these words petite, raven-haired Alison McKim ticks off the various conditions that imprison her much-loved son Zach in a world of isolation and pain.
His problems stem from the fact he was born at just 24 weeks and wasn't expected to live.
Any family would struggle to cope with a child who was suffering from just one of these conditions, never mind the whole gamut. So it's not surprising there's a note of irony in her "that's all" remark.
Yet the sad fact remains that this dedicated, single Dublin parent feels she and her son have been banished to the wilderness now that he has officially become an adult.
For all of his difficult childhood, Zach received the best possible care from the dedicated staff at Our Lady's Children's Hospital, Crumlin.
"We mostly attended the seizure clinic and the department for chest problems," says Alison. "But we rarely managed to make follow-up appointments – invariably we'd end up back in casualty because yet another emergency had arisen."
She says the trauma of being in casualty was greatly eased because they were familiar with the staff, the routines and knew their way around the children's hospital, while Zach seemed calmed by the sound of familiar voices.
But when he was 18, Alison was told Zach would no longer be treated in Crumlin; he needed to attend a mainstream hospital. It was a big blow for her.
"He was still only the size of a 10-year-old, so I was hoping they would keep him on until he was 20," she says.
But that was not to be. So she told her son they would have to go to another hospital when he got sick but it didn't seem to register. "I don't think he really understands; I feel all his fears as well as my own."
Alison says so far their experiences at other hospitals have not been good.
"When we went to A&E there were people literally off their heads on drugs. Nurses were struggling to deal with drunks on trolleys. Drunks were falling about the place putting other patients at risk. Later, Zach ended up in an adult ward with a woman of 102 and another aged 98."
Alison says conventional hospitals are, generally, not geared up to be able to deal with complex cases like Zach's, and the high staff turnover doesn't help.
"You're seeing a different doctor every time – each one with their own opinion on how Zach should be treated. And there are just not enough nurses. The staff are almost afraid of Zach because he is so ill – they are just not used to dealing with this kind of condition. For example, if he were at risk of falling out of bed he would have people watching him all the time; but because he can't move they don't do that. Yet he could vomit and choke or have a seizure. When he is in hospital I have to organise other people to be there when I am not around."
Alison points to yet another problem: access.
Many of the older hospitals have limited space around the beds and in bathrooms.
Compounding the problem for Zach is his size.
"When he was last in hospital they couldn't bathe him properly or move him from bed to chair because they didn't have a sling small enough to hoist him. So he had to stay in bed the whole time, which is really bad for his chest," says Alison
She feels provision needs to be made to ease 18-year-olds like her son, into the adult system. Or even better would be the provision of a special needs unit at all hospitals with a stable staff base.
"I don't mind if Zach is in a ward with five other patients as long as there's at least one staff member to watch over them at all times. You also need more space for wheelchairs and slings for hoists that are suitable for the individual patients. Many people like Zach have special food requirements and of course many of them cannot even communicate in any way to tell you what they need."
All in all she feels pessimistic. "I have completely lost my sense of security.I don't know anyone at my local hospital. No one there knows Zach, or understands his very complex needs. I live in fear of what will happen next."