Mum’s quest to find disabled son a care facility in NI

Published
Image source, Ciara Gilliland
Image caption,
Ben's condition means he requires round-the-clock care from a specialist facility

A County Tyrone mother has said she fears her severely disabled son will be moved "too far away" due to a lack of care facilities for him.

Ciara Gilliland's son, Ben, has a rare condition called Kabuki syndrome.

It means Ben has a number of physical and mental disabilities which require him to have round-the-clock care.

The 13-year-old has spent months in a short-stay respite facility in Omagh, but it is now recommended that Ben is moved to a more permanent facility.

However, with no long-term facilities currently available in Northern Ireland to meet his needs, it has now been advised that Ben goes to a facility in either Dublin or Scotland.

Ms Gilliland fears any private facility located far away from Ben's school friends and his family home in Victoria Bridge, County Tyrone, would be too difficult for both Ben and their family.

She has appealed to both the Department of Health and the Western Trust to help find Ben his "forever home" somewhere in Northern Ireland.

'Nowhere in Northern Ireland for Ben'

Speaking to BBC Radio Foyle, Ms Gilliland said her son, who is non-verbal, "needs professional help, but he also needs to be somewhere where his family can visit regularly".

"The centre [in Omagh] is only short-stay, so it is obviously only meant for children to stay there for a short-term," she said.

"Ben has been there now since June, so they are under immense pressure to get Ben out, but the problem is that there is nowhere in Northern Ireland for Ben to be put," Ms Gilliland said.

Image source, Ciara Gilliland
Image caption,
Ciara Gilliland makes the short journey every week from her family home to visit her son at the centre.

Ms Gilliland makes the short journey every week from her family home to visit her son at the centre.

The mother-of-five said she was unable to provide the round-the-clock care that her son requires while caring for her other children in their small bungalow.

Ms Gilliland believes any dramatic change to Ben's surroundings now would be very detrimental to his wellbeing.

'Absolutely devastated'

"To move him away from close to his school, which he absolutely loves, all his wee friends, would just stress him out," she said.

"To put him somewhere he doesn't know... it would just stress him out so much, I know my son and he would not take it well."

Ms Gilliland said Ben's brothers and sisters were "absolutely devastated" by the thought that their brother may move away.

"I couldn't believe that there was nowhere in Northern Ireland for children like Ben to go and be provided with the care that they deserve," she said.

"There has to be somewhere in Northern Ireland for Ben and other children like him.

"I am still waiting on the Western Trust to get back to me... because as of yet, I don't know where my son is going to be after Christmas."

A Western Trust spokesperson said it did not comment on individual cases.

The Department of Health has also been approached by BBC News NI for comment.

More on this story