Since launching a fundraising drive to secure enough money to pay for a life-changing operation for their two-year-old son, who has cerebral palsy, Emma and Diarmuid O’Neill have been overwhelmed at the generosity of people in Northern Ireland. They talk to LAURA MCMULLAN about why this kindness means the world to them
The day that Emma O’Neill found out her toddler son Cavan had cerebral palsy, she experienced a mixture of emotions.
Partly relief - because she had had her suspicions the two-year-old might be affected by the condition for a long time, specifically since his first birthday, when he had been unable to sit up unsupported to blow out the candles on his cake, and, unlike other children his age, could not crawl or stand.
But the 36-year-old Belfast woman, who is a freelance journalist, says that the overriding feeling was one of sadness - sadness and hurt at the thought of his future.
“I just felt that the world is cruel enough, and all I could think about was secondary school, whether people would make fun of him, and if it would be hard for him. I felt for him and his future - would he get a girlfriend? Would he have a normal life?”
Little Cavan is affected by a form of cerebral palsy known as spastic diplegia, which causes muscle tightness in his legs, affecting his ability to walk.
However his parents Emma and Diarmuid, through extensive research, have discovered that pioneering spinal surgery to release him from his pain, by permanently severing the nerves that cause the tightness, and allow him “to walk unaided in all environments”, is available in a hospital in Missouri in the USA.
It’s known as SDR - selective dorsal rhizotomy - and the cost of the operation, plus all Cavan’s aftercare treatment, would cost the family in the region of £80,000.
And so they have embarked on a fundraising mission to secure the cash needed to give their precious son a chance to have as normal a life as possible, and enable him to do all the things other little children of his age can do.
“I had my suspicions about Cavan around his first birthday; there was a lot going on in the family at the time, but I remember thinking that he should be sitting upright by now,” says Emma, speculating that it was, perhaps, “a mother’s instinct.”
She continues: “If I’m honest, from the day and hour he was born I was always so anxious about him, I thought that something wasn’t right and I had this fear that something was going to happen to him, and it never left me until the day I got the diagnosis. It was then that I felt, ‘so this was what it must have been all along.’
Like any concerned mum would, Emma turned to the internet to see if she could find out why her son seemed late in his physical development, and two words which struck fear into her heart kept coming up - cerebral palsy.
At first, she felt a sense of denial, and told herself that Cavan was just behind other children because he had been born six weeks prematurely.
But finally, her worst fears were confirmed after she had to take him to A&E after he got a viral infection.
He was 18 months old when he had a MRI scan and it found that he had damage on his brain known as Periventricular Leukomalacia (PVL), which is in keeping with cerebral palsy.
By that stage, doctors realised that his legs were most affected, and he was subsequently diagnosed with spastic diplegia. Emma says that she and Diarmuid “asked 100 questions” but all that doctors could tell them were that they didn’t know how severe his condition would be, and it would be a matter of taking it day by day.
Since then, Cavan has reached all his other milestones in terms of his speech and cognitive skills, but restricted movement in his little legs are continuing to hold him back. And it affects his life on a daily basis.
“You have to carry him everywhere,” says Emma, who is small in stature herself.
“He can’t walk and will never enjoy the physical freedom that other children of his age do. To stand hurts and he suffers from tightness that is only getting worse as he grows. We are a long way off from getting Cavan to walk, even with assistance, despite the hours of therapy we and his two physiotherapists put in.
“When you take him out there has to be somewhere you can set him on the ground and let him crawl, as it’s the only way he can get about, and he’s at the age where he wants to. It’s really not an option to have him in his buggy the whole time.
“If we go into town I’ll make sure to go to the Disney Store and let him crawl about the back of the shop, or if it’s a nice day, I’ll let him crawl around the City Hall. But we took him to the farm and it was a nightmare. He gets upset and frustrated when he can’t get down.”
And heartbreakingly, little Cavan himself is also now starting to realise that he is limited in what he can do with other children, as Emma witnessed at a recent birthday party at a soft play area.
Indeed, the surgery which doctors in the US say can help Cavan is nothing short of a beacon of hope for the O’Neill family, and they have set up a Just Giving page called Cavan’s First Steps, through which donations can be made.
They are aiming to raise a total of £80,000, but once they hit the £60,000 mark, they can book the surgery, which would be performed at St Louis Children’s Hospital in Missouri.
“SRE is quite new to the NHS, and they can only do it in four hospitals in England,” says Emma, adding that the surgeon in St Louis has been performing it for more than 20 years and on over 3,000 patients.
She says there are “no guarantees” that Cavan could receive the same surgery in Britain, and she is not prepared to wait any longer to try and help her son.
The family have met little Oliver Dickey from Coleraine, who was diagnosed with the same condition as Cavan, and became the first child from Northern Ireland to undergo SRE surgery when he was 18 months old.
They are hopeful that Cavan, like Oliver, will benefit from the surgery, which Emma says will be “life-changing.” When the surgery is complete, the O’Neills will have to stay in America for a month, so Cavan can undergo intensive therapy every day for two hours.
This will then continue when he returns to Northern Ireland for an hour a day for two years after that.
Emma adds: “Cavan is a smart wee boy, he’s very clever. He’s probably ahead with his speech, he chats away, and I just think - why should we let this (his condition) be the only thing holding him back?”
If you want to help little Cavan, log on to www.justgiving.com/cavansfirststeps.