A young County Armagh couple have been left “devastated” after learning their son – already fighting multiple medical conditions – has now been diagnosed with cerebral palsy.
And, cruelly, the diagnosis actually came on Wednesday, on what was Cerebral Palsy Awareness Day.
Shauna and Darren O’Reilly had earlier launched a GoFundMe page to try and raise enough money to seek treatments which could improve the quality of life for their son, Eliseo.
The couple now live in Liverpool, although Shauna, originally from Keady, and Milford man Darren, frequently return to see family and friends.
The GoFundMe page has raised over £19,000 to date.
But Shauna and Darren now hope to raise more to help them in their quest for a better life for Eliseo, especially after this week’s latest diagnosis.
The couple had been blessed with the birth of a baby daughter Alessia, now going on three years of age, followed by the arrival of twin boys, Eliseo and Luca, in December 2024.
Shauna, speaking to Armagh I in February, explained: “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.”
While Luca is thriving, Eliseo has been plagued by medical concerns which have proven traumatic for the whole family.
The little boy has already spent much of his young 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.”
Shauna and Darren had been told that it was suspected Eliseo had cerebral palsy, but it could not be confirmed at that time.
At an appointment on Wednesday, sadly, it was.
“We have since found out that he has got a bit of a hearing loss and he’s got a visual impairment. He can see, but it’s not perfect,” said Shauna.
“The most recent diagnosis is global developmental delay and severe cerebral palsy in both upper and lower limbs. It’s not looking good for him to be honest.
“We knew it was going to happen at some stage, but we just weren’t expecting it to be diagnosed yesterday. They’re going to give us a bit of information, answer our questions, what this means now for Eliseo, his life expectancy and even just what he’s doing.
“We’re going to have an appointment next week and should know more about it.
“We were absolutely devastated. It was just horrendous news to be told. Even though we knew it was going to come at some stage, hearing the words was just devastating.”
The family had a physio through the NHS, but found it was “not enough” for Eliseo. Going private, they noticed there had been more improvement, but at considerable expense.
In addition, to undergoing physio and occupational therapy, Eliseo is also under the care of a neurosurgeon, because he had been diagnosed with hydrocephalus.
“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 2024 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 last year 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, the family wanted 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.”
Of course, such treatments are far from inexpensive and the family are desperate to do what they can for their little boy.
“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 asked anyone who can help make a donation – or share their appeal – to do so.
When they launched their appeal, Shauna said: “We’ve got one chance of this. Let’s just try and give him a better life.
“Our son has already survived more in his first year of life than most people face in a lifetime. This is our son’s fight for a future.”
The family have so far raised over £19,000 but, in reality, need to raise much more to deliver all that they hope to do for their darling son.
“We need as many people to see this as possible, just to try and get him abroad and get him this stem cell treatment and hope that it gives him a better life,” Shauna said this week, after confirmation of this latest diagnosis.
“It’s horrible seeing him not make his milestones and just continuously taking over his life.
“So far, everyone’s been amazing. We’re so overwhelmed, in a nice way, with the donations, the charity things that have been going on, and the events.
“We’d like to thank everyone for their support, for the well wishes and donations. Everything’s just been amazing and everyone’s rallied around.
“We’re still trying to process everything and understand what this means for the future. It’s overwhelming, but we love Eliseo more than anything and will support him every step of the way. What we do know, doing this is something he needs more than ever.”
If you would like to donate and help Eliseo access treatments, you can do so here.
