A young County Armagh couple have launched a fundraising drive to help give their son – who has already undergone 13 surgeries in a matter of months – hope for a better quality of life.
“We’ve got one chance at this,” Shauna O’Reilly told Armagh I this week, as she and husband Darren set up a GoFundMe page to help their darling baby boy.
Eliseo and his twin, Luca, were born at just 28 weeks.
And while Luca is thriving, Eliseo has been plagued by medical concerns which have proven traumatic for the whole family.
Shauna, originally from Keady, and Milford man Darren, have been living in Liverpool for the past 12 years, but frequently return to see family and friends.
They were blessed with the birth of baby daughter Alessia, who is now aged two-and-a-half, with the arrival of the twins following in December 2024.
Shauna told Armagh I: “I had IVF and I got three embryos; Alessia was my first out of the first round of IVF, and then we did the other two embryos, when I got pregnant with the twins, but unfortunately they came very early at 28 weeks.”
Eliseo O’Reilly
For Eliseo, and his devoted parents, it has been a very difficult journey, with the child have already spent seven months of his short life in hospital.
“Since birth, he has faced significant medical challenges, including hydrocephalus, a brain bleed, and a rare form of epilepsy,” explained Shauna. “He has already undergone 13 surgeries, most of them on his brain but, despite everything, he continues to fight every day.
“Eliseo’s twin, Luca, he’s got no medical concerns. He’s walking around the furniture, saying, Mama, Baba, Dada, and all of that. So it’s quite hard that, Eliseo, his brother, is not doing anything really. He basically doesn’t move.
“He recently kicked his legs for the first time, but he just doesn’t really move. We’ve been told, undiagnosed, that he’s got cerebral palsy, but they can’t actually diagnose it until he’s two, so, yeah, it’s hard.
“Because of the way he is now at the minute, with no movement, he gets a physio that comes in through the NHS, but it’s not enough. We’ve just recently started going private and he’s doing a lot more since then.”
Eliseo is not just undergoing physio and occupational therapy, but is also under the care of a neurosurgeon, because he had been diagnosed with hydrocephalus.
The neurosurgeon is also of the opinion that a confirmation of cerebral palsy will come in due course, on top of all of the other conditions which are hampering his progression.
“He was the one who said that Eliseo’s unlikely to ever walk or talk,” explained Shauna. “He said I can’t 100% tell you, but he’s got severe brain damage and, you know, his future doesn’t look good for him at all, to be honest with you.
“He’s got multiple cysts in his brain and the ventricles in his brain don’t communicate, because the cysts came with the meningitis he got.
“He was born in December ’24 and then he got hydrocephalus and then after that, he needed surgery. So he was born in December, and then in January, he got a subcranial shunt. Basically, it’s like a temporary measure until he’s big enough to get the permanent VP shunt. That’s life-saving, he needs that for the rest of his life.
“He got that done in March and he was actually doing okay for him. He started lifting his head, but then he got meningitis in May, for the second time, and that’s where everything sort of went downhill.”
Through the use of EVD – external ventricular drain – medics were essentially ’taking the infection’ from Elisio’s brain.
Said Shauna: “It was just pus coming out that was in his brain. That was obviously the meningitis. He had one-to-one care for nine weeks in high dependency on the ward for that.
“Overall he’s had 13 surgeries, but most of them have been on his brain. Originally he only had one VP shunt and then in August he got two put in.”
After watching their son endure so much, now the family want to explore stem cell treatment and private therapies that are not available on the NHS in the hope that they will make a difference. These, unfortunately, are only accessible abroad in countries such as Panama, Mexico, and the USA, and will require considerable financial outlay.
But for Shauna, she said they made their decision to explore that avenue after seeing how much it had worked to help others.
“Obviously he’s not moving at all, what I would say, and I’ve seen kids on TikTok and on Facebook and they’re doing these things after treatment. Like this one little girl, she wasn’t lifting her head and now she is and she’s doing really good with it.
“So that’s when I started looking into it. I was like, oh, maybe we should go down this route. So I’ve been in touch with a few places.”
Eliseo O’Reilly
Of course, such treatments are far from inexpensive and the family are desperate to do what they can for their little boy.
Eliseo is also under the care of an eye clinic because he is unable to track or focus with his eyes and his parents are still waiting for further tests to determine the extent of his vision and whether he can see.
“His private physio is £100 a week. And then he needs to see an OT and then we’re doing hydrotherapy, so it all adds up,” added Shauna. “This is something that he will need for the rest of his life, really.
“And the stem cell treatment, unfortunately, isn’t just a one-off treatment, to see results. You do have to do multiple.”
Mum and dad opted to launch their public fundraiser and would ask anyone who can help make a donation – or share their appeal – to do so.
“We’ve got a GoFundMe at the minute and we’ve asked for £100,000. Obviously, that’s a lot, but when we’ve added it all up, that’s how much it would cost to cover everything that we would love for Eliseo. The cost of everything is just so overwhelming for me and his dad really to do.”
The funding is also to help cover all ongoing treatments that Eliseo will need going forward for the rest of his life.
The costs of what Eliseo and his family are going through is not just financial; they are paying daily with the emotional strain and uncertainty.
“It’s very, very traumatic, what has happened,” Shauna admitted. “And to be honest, it’s about the whole family. My little girl now thinks that Eliseo lives in the hospital. When we drive past it, she says, ‘Eliseo lives there’, because that’s all she’s really known.
“And it’s ongoing, he’s in the hospital all the time for appointments and it is tough. It’s hard, because obviously you’ve got Luca, his twin, who’s perfectly normal, and then you look over and you see Eliseo just lying there. So it is hard. Yeah, it is hard.”
The twins will be 14 months old next week – 11 months had they been carried full term.
For Eliseo, he has been through more than any child should in such a very short time.
Understandably, the whole family, in Liverpool and here at home in Armagh, want to explore every avenue to give him the best chance going forward.
“We just thought, you know, we’ve got one chance of this. Let’s just try and give him a better life.
If would can help, please consider donating at the link here.
