By Aileen Robertson

THE FIFE family of a baby with a rare genetic condition face a wait of up to a year before they can care for him at home.

Ryan Turner, of Rosyth, is just nine months old but has already had multiple operations because he was born with Nager syndrome.

He is one of only two children with the condition in Scotland.

Worldwide, only 90 cases have ever been recorded.

Nager syndrome is a congenital defect which affects development.

Ryan is currently breathing through a tracheotomy because he has no airways in his nose and underwent heart surgery when he was just four weeks old.

Because of Ryan’s condition, he spends most of his life in hospital, and his parents Karriann Gillon (31) and Kenny Turner (43) have had to devote their lives to caring for him.

Karriann and Kenny believe the best place for Ryan is at home but say they do not have enough space to care for Ryan. As well as looking after Ryan, they have three other children—Chloe (11), Keiran (8) and Adam (2).

Fife Council is looking into building an extension at the couple’s home, but this could take up to a year.

The couple, who stay in Burnside Crescent, claim they were told it could take two years to build an extension but the council brought work forward after they contacted the Press and appeared on GMTV.

Karriann said, “Obviously the council were not happy about the situation but they told us their hands were tied and there was nothing they could do about it.

“We just thought, ‘we’re not going to sit back and take this. He’s our son and we want to have him at home on a permanent basis.’

“Obviously, because it’s been in the paper and on television, the council thought it would be bad for them.”

She continued, “It’s still going to be a few months before anything gets started and it takes time to build an extension. We’re still talking seven to eight months and he’ll be a year old in April.

“We’re relieved but we’re still annoyed because we’ve had to put up a fight to get the council to do anything.

“We’ve gone through months of hell and we have three other kids and have had to do a lot of travelling back and forwards to the hospital. Even when we get him home we know we have to take him back to the hospital soon.”

The amount of time the couple have to spend at hospital is starting to upset their other children and they miss having their brother at home.

Karriann said, “One day his sister started crying and said we were never there.

“We only see the kids a couple of hours at night before we have to go to the hospital and, on the days when Ryan’s in hospital, our two-year-old tells us he wants to see him.”

Karriann added, “The syndrome is very rare. There are only two in Scotland and only 25 in the world at the moment, so we don’t know what the future holds for Ryan. At the moment he can’t even sit up on his own.

“But Ryan’s brilliant. I’ve seen him sedated and paralysed on a ventilator, and as soon as he comes round and sees us the first thing he does is smile.”

Fife Council administration leader Peter Grant said the authority was unable to re-home the family in a larger house in the same area and building depends on ground investigations.

He said, “I am also informed that there is no social work reason why the baby cannot be adequately cared for in the family home as the concerns at this time are around the health care needs of the baby and the family accommodation.

“I can however understand the family’s desire for a bigger house.

“The head of housing has assured me they are working very hard to meet the family’s request for bigger accommodation. However, we can’t allocate them a house that we don’t have.

“There are very few council houses of the size they are looking for in the area they are interested in, and we can’t force someone else to move out to make room for them.

“We are exploring the possibility of building an extension, but there is an issue with underground coal seams and ground conditions will need to be investigated.

“If an extension is feasible it will require at least six to 12 months for completion.”