A fundraiser has been launched to help a Northern Irish family get their baby boy, who has spent half of his little life already in hospital, ‘vital’ medical treatment abroad.
Shauna and Darren O’Reilly from Armagh were ‘absolutely over the moon’ when they found out they were pregnant after going through rounds of IVF. The couple had great luck with the fertility procedure after years of trying to have children, and now have three children: Alessia, who is two and a half, and twins Eliseo and Luca. While Alessia and Luca were born and remain healthy, poor little Eliseo has already undergone thirteen operations, most of them on his brain.
“We had three embryos, our first one was Alessia, our little girl, and then we did two other embryos, which gave us the twins, Luca and Eliseo. We were absolutely over the moon when we found out we were having twins; we couldn’t believe it. But then I spontaneously went into labour at 28 weeks. It was so scary. We knew twins could come early, but 28 weeks was just crazy,” Shauna told RSVP Live.
The twins were born on December 9 2024, and since then, the family has faced multiple incredibly frightening and uncertain periods with baby Eliseo. Shauna explained that it all happened with a brain bleed, which soon escalated.
“He got a brain bleed that turned into a condition called hydrocephalus, so he needed a VP shunt inserted. He’s going to have the shunt for life, so it was basically life-saving. After he had that fitted, he was allowed to go home in March, and that was brilliant; it was nice to have him home. Everything was going okay, to be expected, for him, and then he got bacterial meningitis a few months later. He was just acting a bit strange in the night, and his oxygen levels were really low, so we took him straight to the hospital.
“He had to get the shunt removed because it was infected, and he had three EVD drains done, which basically were in his brain, taking out the infection. It was just pus coming out into the drain; it was horrendous.”
The family had to stay in the hospital for nine weeks with the young baby, which Shauna said was an incredibly frightening time.
“We were told when he went down to surgery that the next 72 hours were critical, that he mightn’t make it through because the meningitis was just that bad. To be honest, the meningitis has just basically ruined him. We had seen him smile once before he got it, and then he regressed a lot; he wasn’t doing anything. He was in a vegetative state.
“Then, he started having seizures, and he was diagnosed with a rare form of epilepsy, called infantile spasms. He has large cysts in his brain, and he has two VP shunts now instead of the one because there is that much need to be drained. He’s now on medication for it, and he’s actually been seizure-free since November.
“But he’s got no head control. He’s got no movement that a 12-month-old should have, like he doesn’t sit up, can’t move his head. He has only recently started kicking his legs.
While the couple have their hands full with providing constant care for Eliseo, his twin, Luca, is developing on pace for a child his age.
“His twin is healthy, he’s walking around the furniture, he’s saying ‘mama’ and ‘dada’, he’s doing everything he should be doing, whereas Eliseo has just recently started smiling. He has developmental delays, so he’s way behind, but it is so nice to see him smile again, because now we know he’s happy. It’s just everything you take for granted with a baby, and then when they don’t do it, it’s heartbreaking. We’ve been told by his consultant that he probably will never walk or talk,” Shauna said.
The effects of Eliseo spending so much time in the hospital can even be seen in his sister, Alessia, who has noticed the absence of her baby brother.
“My little girl, Alessia, who is two and a half, when we drive past the hospital, she’s like ‘Oh, Eliseo lives in there!’, she just associates the hospital with him.
“Alessia is like a little mother hen to him, though. She is all over him, and now she’s starting to see the changes in him. She’ll run over to me and go, ‘Eliseo is smiling!’ Which is so nice. He doesn’t grab for toys or anything, but she’ll always make sure he has a toy sitting on him somewhere.”
Shauna, who is 36, works part-time as a hairdresser, as she wanted Eliseo to have a bit of normality for as long as possible, ‘until the day that he won’t be able to have that kind of normality’. At the moment, he attends nursery for two days a week. Her husband, Darren, is a primary school teacher.
“Everyone has been amazing. His nursery is actually doing a little fundraiser for him. There are just so many little things we’re going to look forward to, like raffles and bake sales by friends. Everyone has just come together. It’s been overwhelming, but in a nice way. We never thought we would have to be put in the position where we would have to put a GoFundMe up, but it’s all for him.”
The Northern Irish couple decided to set up a fundraiser for their son, wanting to do their best to give him a chance at a better life.
“While his future remains uncertain, what we do know is that he will never have an everyday life, and he will require lifelong care and support,” they explained.
“We’re looking at stem cell treatment after seeing other kids do so well from it. We just couldn’t sit back and not try to do everything for him. As his parents, we decided to start the GoFundMe. We just want to see if it gives him a better life; we’ve got this one chance to try and make a difference in his life.
“Hopefully, the treatment would give him a better quality of life, like healthy vision, as he has visual impairment, and we hope it will help his movement and head control.”
Stem cell treatment, however, is notoriously expensive, as well as the transport, and perhaps most costly of all, accommodation. The fundraiser currently has a goal of £100K and has raised over £17,000 from 500 kind donors so far.
“We’d have to go abroad and private for the stem cell treatment, we’re looking at Panama, Mexico, and America at the minute. We’re talking to different companies just to try to get the best one for him. But it’s not just a one-off treatment; to see the benefits of it, you have to keep going back and forth. We’d have to stay over there for a few weeks while they monitor him, too,” Shauna said.
“He recently started with a private physio that’s weekly, which is really expensive, and we’re doing hydroptherapy too; it all just adds up. We’ve seen a massive difference in the physio, though; he’s now kicking his legs a little bit more. He’s going to need all of this for a lifetime, but early intervention is the best thing for him.
“As parents, we never imagined we would have to ask for help like this. We are doing everything in our power to support our son, but the cost of specialised therapies and treatments is overwhelming. Every donation, no matter the size, will help give Eliseo the best possible chance.”
You can check out the fundraiser for Eliseo by clicking here.
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