A Ballymoney family are hoping doctors working between London and Belfast can diagnose mystery bleeds in their three-year old son Oliver.
Victoria Blair told Belfast Live that Ollie received emergency surgery in 2019 when he was two months old, for a malrotation of the bowel.
He spent nine months at the Royal Victoria Hospital for Sick Children but could still not feed normally.
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Fast forward to today and little Ollie has been through numerous procedures to ensure he can get the nutrition he needs to grow and thrive.
It means his nutrients are delivered via TPN (total parenteral nutrition) through a tube, which has to be done over a 12-hour period.
Unfortunately, during the last three years, Ollie has suffered numerous internal bleeds and his loving family are trying to get a diagnosis for what is causing those.
"When we were in Great Ormond Street Hospital in July, they did a CT scan which was able to show it was the main artery in his bowel that is under pressure," Victoria told Belfast Live.
"It could be because of his very first operation which was three years ago tomorrow, they think that could be the cause of it.
"Basically it's the main artery that feeds the blood back up to your heart and his isn't getting there and it's under pressure and then it's bleeding on him.
"He's severely anaemic with that and needs blood transfusions now and again, recently it's been every three or four weeks that he's needing that."
The family have been back and forward to London and could face the prospect of going there again before Christmas, depending on what is said at their next review at the end of the month.
He may also face a trip to Sheffield for further treatments and the family have reluctantly set up a fundraising page to help them with these costs.
"When we left Great Ormond most recently, it was left on the cards that there's going to be multi-disciplinary meetings between London and Belfast on what they're going to do and what would be the best thing for him," she added.
"That's hopefully the plan - it's good that there's a wee bit of money raised so that's there for the future if we have to go back.
"That could possibly be before Christmas, depending on what the team come up with.
"He's in and out of hospital all the time so basically your life just stops sometimes, until you get past that next hurdle."
She added that the family has been blessed to have the support of aunties and grandparents that have helped them so much already.
"Basically it's hard going about your everyday life not knowing what's wrong with him three years later," she said.
"It's been rough at times, but we have a very supportive family, between grandparents and aunties that have helped us out so much.
"When he was a wee tiny baby, they would have gone up to the Royal to let me see my other son Carson as well, while his daddy worked away to try and keep everything afloat.
"Carson just thinks this is normal and he'll ask me wee things like if he had tubes when he was a baby, but he deals with it pretty well."
Victoria says she understands that whatever happens, Ollie will require lots of love and attention in the long term and she is realistic about any diagnosis.
"Mainly what we would like is that he could possibly come off TPN, but if not that's not the end of the world," she said.
"He's on TPN 12 hours a night, our hopes would be even to get it reduced to even six nights a week or five.
"But we know this is a long-term thing and it's going to take time and it depends on what way his body reacts to certain medications and that.
"He goes about his life like a normal wee boy and people would always say you wouldn't think there was anything wrong with him.
"We just want him to grow up as happy as he can - it would be nice to get rid of TPN but if not, at least it's keeping him alive.
"Hopefully there will be some answers in the next couple of weeks."
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