Ciara Gilliland’s 13 year old son Ben has Kabuki Syndrome, a rare genetic disorder that results in learning disabilities as well as physical disabilities. Ben has been in short-term respite care in Omagh and Derry but the family have been told that he needs to be moved to a permanent home in Dublin or Meath. Ciara wants the Health Minister and the Western trust to provide adequate long-term housing for Ben and other children like him where they can still be close to their families.
She explained, “Ben has a lot of needs. He has Kabuki syndrome, so he has a 45 degree curve in his spine, he is incontinent, nonverbal and he has lots of behavioural issues.
“Ben attended Rosebuds respite centre in Derry for a while until they closed for a year to facilitate one child. It’s open again now but I hear talk of it closing soon for the same reason.
“In May, I got sick and was in and out of hospital so Ben had to go to a respite facility because he was very aggressive towards me and I couldn’t cope anymore. Every week I would go to see him and there was loads of meetings with social workers to figure out where to place him long-term. It’s been so tough, I have had breakdowns over this and it’s just so stressful.
“Three weeks ago, I thought that I needed to try again because I was told he could be sent to Dublin or Scotland, which I obviously didn’t want. He came home on the Saturday and he was only home three hours when he attacked me again. He left me with a big scar on my face, he was violent and he wrecked the room so I knew I had to send him back. We kept him until Monday and then I phoned everyone involved, all the social workers, who had an emergency meeting and decided he would have to go to Avlon respite centre in Omagh. Throughout all this, they’re telling me this is a short-term facility and he cannot stay there long-term. There is nowhere in Northern Ireland for children like Ben who have complex needs so they are now looking at two private companies, either in Dublin or Meath. That just wouldn’t work. He would have to change schools and they have different accents and because Ben can’t talk, this will be so difficult for him and he might not understand them. He will miss seeing us and hearing from us and we’ll miss him too.
“I keep being told by the social workers that there is nowhere for him to go here and he can’t stay in Omagh. They are telling me that they will pay for me to go see him in Dublin and they will put me in a hotel but I don’t want that. I would walk the earth to visit my son but going to Dublin once a week is just too far. Now, if there’s an emergency, I am only up the road but that would be a different story if he was far away.
“It’s absolutley heartbreaking and I can’t let it happen. And we’re not alone either. There are other families in the same situation and I want to help as many of those families as I can. Children have been sent to Scotland before and I just find it unbelievable that there isn’t one unit in the North of Ireland for children like ours. I would even go to Belfast if there was one there but Dublin is a joke.
“Everyone who cares for Ben, the medical team and his school are all in the North and they are the same since he was born. I wouldn’t want to change that now. I just want to be close to my son.”