NI mother fears disabled son, 13, will be sent to live in Dublin for care

A woman in Co Tyrone fears her teenage son, who has a rare genetic condition, will be sent to live in a facility in the Republic of Ireland for care.

Thursday, 25th November 2021, 8:14 am
Ben O'Neill, 13, with his mother Ciara Gilliland

Ciara Gilliland is unable to care for her 13-year-old son Ben — whose condition means he has learning difficulties, is non-verbal, and presents challenging behaviour which can cause physical harm to those around him — at home.

He has been living for some time in a specialist respite centre in Omagh for children with learning difficulties and other disabilities.

But Mrs Gilliland said she has been told this is a temporary solution, and been informed by health authorities her son may have to be moved to a facility in Co Dublin, Co Meath or in Scotland.

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She has now called for Health Minister Robin Swann to intervene, and has written to the minister who she is inviting to visit the centre in Omagh to meet Ben.

Speaking to the News Letter, she said: “Ben was diagnosed with Kabuki syndrome - that’s a rare genetic condition.

“He was diagnosed five years ago and before that we didn’t know what it was. He can’t talk, he’s non-verbal. Ben is double-incontinent. He has a 45-degree curve on his spine. One side of his body is bigger than the other side, so he walks with a limp.

“He has severe learning difficulties and his mental age is only three.

“He has severe behaviour issues. I have raised Ben for most of his life with nobody knowing his condition. I took him to Manchester to see a specialist, who said he has the rarest form of Kabuki syndrome - he is the only one on record with his condition - so there is no information about his needs. It is just ‘get on with it’.

“Ben gets very frustrated and, because I’m his carer, he lashes out at me because I’m his mum.”

Despite the best efforts of the family to care for Ben in his own home, his size as he reached adolescence and his difficult behaviour made this an impossible task.

“Ben is a big boy,” his mum explained. “He’s about 15 or 16 stone and he’s only 13 [years old] - the strength of him.

“And we have a four-year-old now as well. It became too much. He loves his wee sister but he might push her or pull her, and she doesn’t understand why he would do that.

“He’s too big now. If he lashed out and hurt me, I couldn’t cope. He was just too big and too strong, so I phonedthe social workers in June.”

It was at that point Ben went to stay in the respite centre in Omagh, a short drive away from the family home near Strabane.

But Mrs Gilliland said health authorities have maintained this is just a temporary solution. And with no suitable alternative, Ben may be forced to live as far away as Dublin or Navan in Co Meath for the care he needs.

“I want the Health Minister to come and meet Ben, to see if he can do something about it,” she added.