Delight as long-term care is secured locally for Ben

A VICTORIA Bridge mother has expressed her delight and relief on receiving the news that her son who has substantial additional needs will receive his long-term care close to home.

In November, Ciara Gilliland launched a campaign to ensure her son Ben O’Neill found permanent care in the local area instead of a Dublin facility as the Western Trust had initially proposed.

Ciara told the Chronicle, “We had an appraisal meeting where the Trust threw everything on the table on the different things they could do with Ben.

“They still brought up the Dublin and Navan facility and they were telling me it’s a great place and I said, ‘yes, it sounds great but it’s just not for Ben’. They asked me what I wanted for Ben and I said he should stay where he is.”

The 14-year-old is currently staying at the Avalon House facility in Omagh which has been designed to offer respite care for disabled young people rather than long-term stays. “The Trust applied for Avalon to become a facility for long-term, medium-term and short-term stays and they were accepted for that,” Ciara explained.

Ciara says they are currently examining restructuring the building so Ben and others in long and medium term care will have their own space separate to those receiving respite care.

Ben, who was diagnosed with a rare genetic condition called ‘Kabuki’ several years ago, is able to receive visits twice a week and his mum says he is “really, really happy” in the Omagh facility.

Ciara said she “couldn’t believe it” when she got confirmation that Ben could stay close to home.

She also expressed thanks to those who raised awareness of their plight.

“I couldn’t believe the amount of support that we got and I couldn’t believe that his name was mentioned in Stormont twice,” Ciara said.

She added, “I think it was the pressure of social media that made the Trust change their position.”

Work has begun on options for Ben’s care for when he turns 18 to ensure a “smoother transition”, Ciara said.