Uimhir a trí, Niall Smyth…
“LIAM Óg must be injured,” the McGlinchey Park crowd murmurs.
For a long number of years, the hurling fates of Kevin Lynch’s and Derry have had the hand of Liam Hinphey at its stem.
There was a sense building in the weeks running up to the Dungiven club’s mid-September semi-final meeting with Slaughtneil that, after a seven-year spell without a county title that contrasts starkly with their dominance of the decade previous, there was a scalp there to be taken.
With Brendan Rogers and Gerald Bradley out injured for the champions and others carrying knocks, they looked vulnerable for the first time in years. And Kevin Lynch’s recent strong underage teams had completely refreshed their senior side. They looked ready.
And then their team was read out. Liam Hinphey was absent from the full-back slot. Everyone assumed that they’d done a great job keeping an injury quiet, but that he just hadn’t made it.
Instead, he was in the Paediatric Intensive Care Unit (PICU) at the Royal Hospital for Sick Children.
His son, the newest Liam in the paternal line, had the previous day taken the tenth epileptic seizure of his young life.
It was the worst of them so far. The symptoms that they’ve learned to recognise were spotted on the Saturday morning by his mummy Clare.
“We trained on the Saturday morning and when I came home, Clare said she was contemplating giving me a shout. She just thought he wasn’t looking the best,” says Liam.
“As he’s starting to live with the condition, we can start to see the signs of it a bit more. She reckoned his eye was drooping a wee bit, and his temperature’s always a fair sign of it. It was starting to spike up.
“We have open access to the ward in Altnagelvin because he’s there so frequently now. We rang them and said we’d take him in to get checked.
“We were in the ward around 1pm and they said he had a wee viral infection, which is a wee trigger for it.
“They started him on an antibiotic and an additional epilepsy medicine to try and stave off the seizure, but his temperature kept spiking that day no matter what they did.”
Around 7pm, young Liam took a seizure that lasted about half an hour. When it finished, his breathing was “fairly badly compromised,” his father says.
“He wasn’t breathing on his own. He had to be brought to intensive care in Belfast because he had to be intubated.
“So we ended up in Belfast the night before the game and he was in intensive care then for a couple of days that week. His timing could have been a bit better, I ended up missing that match!” he jokes.
Like any parent in such a situation, they have to try and lighten the load by drawing whatever humour they can from the hand they’ve been dealt.
Baby Liam was born on the night of April 10, 2017. At first he seemed like a perfectly healthy, happy baby boy to double the clan’s size, joining his three-year-old sister Cara.
But one normal morning towards the end of September, when he was five-and-a-half months old, Liam and Clare were getting him dressed when they noticed his left arm starting to twitch.
“Then his left leg started twitching. I said to Clare: ‘What’s going on here?’ His left eye started twitching, the left side of his mouth started drooping down. I thought he was having a stroke.
“I rang the ambulance and I was saying to them I didn’t know what was going on, I didn’t know if he needed an ambulance or not, but when I described his symptoms, the girl said: ‘There’s an ambulance coming now’.”
That it was eventually classified as a seizure came as a surprise to the pair of them.
His body didn’t go into a tonic-clonic seizure, which is a full body seizure that most people would conjure up in their minds when they think of epilepsy.
Instead, his started off as focal seizures, which affect initially only one hemisphere of the brain.
In the year since his first, Liam has since had a mixture of tonic-clonic and focal seizures. On each occasion, he has to be hospitalised.
There’s no PICU in Altnagelvin Hospital, and on one occasion the Belfast one was full so they had to take him to Dublin.
His second seizure came about three weeks after the first, at which stage he was in the local nursery.
At that stage, doctors began to suspect a case of Dravet Syndrome (pronounced as ‘Dravey’, with a silent ‘t’), with which he was subsequently diagnosed.
It’s a rare genetic dysfunction of the brain which begins in the first year of life in an otherwise healthy infant.
Most children who suffer from it will, at some point, suffer some developmental disability. Treatment involves finding a combination of medicines to treat seizures and prevent emergencies in such cases, but there is no cure.
Thankfully Liam’s development to date has been good.
“There are a lot of children with the condition that have mobility issues, and can be severely hampered developmentally.
“I’ve heard of stories where children are developing fine and a bad seizure halts their development in its tracks, and they sort of stay as they were at that time.
“The regression with the conditions tends to manifest itself between one and two years of age, and you have an idea then how it will pan out.
“He’s a year-and-a-half at the minute and fortunately enough he’s developing as he should be for a child of that age, so that’s something to be thankful for at the minute.
“We’re well aware that regression is potentially part of the condition. It affects everybody differently so there’s no case that you can follow and say ‘this is exactly what’s going to happen’. We more or less have to just keep playing it by ear.”
****************************************************
NATURALLY, it’s all come as a shock to the system. Their lives have changed in all sorts of ways.
There are the small things like having to hide Cara’s flashing toys for a while, assuming as most would that the epilepsy meant photosensitivity, and that Liam couldn’t be exposed to them.
“Whenever he had his first couple of seizures, we hid most of Cara’s toys. We had a cupboard full of flashy toys we thought we had to get rid of.
“But then we were told that there’s only 3 or 4 per cent of people that have epilepsy who are actually affected by that, and he’s not. So we had to get them all back out again and flashing away in front of him no problem.”
Cara’s ability to offer innocent humour in it helps them. Days before Liam’s latest seizure before the Slaughtneil game three weeks ago, she’d been asking her parents when he was having “his next epilepsy”, because that meant she’d get to go and play with the cousins and stay for a sleepover in uncle Kevin’s house.
One of her bedtime stories in recent months has been ‘Spike And Me’, which was backed by Epilepsy Action and tries to educate on the right thing to do if someone takes a seizure.
“It’s obvious she’s going to be affected by it, but she’s very good. She’s just happy when we come home and Liam’s home safe.
“It’s probably good that they’re so young at the moment. Liam himself, he’s great in between the seizures, he’s not conscious enough to be afraid of it. I know a big fear for people that have epilepsy is the unknown, when’s it going to happen, how badly are you going to be affected by it when it does.
“Hopefully it will be a few years until he becomes conscious of it. For Cara as well, it’s an additional worry for a small child that they normally don’t have to think about at that age. It’s just something we’ll all have to live with, to deal with and learn how to manage it for them.”
The impact on Liam and Clare’s lives has been significant.
While they hope that Liam will be able to attend mainstream school when he’s the age, they had to take him out of the nursery because of his susceptibility to infections.
That’s meant Clare giving up her career to become his full-time carer. She had been a HR manager before she moved into the world of finance, where things had been going well.
“It’s tough for Clare. She’s a really hard worker and it’s been a big sea change in the last year, from having ambitions of where you want to be in your working life to being at home as a full-time carer.
“Everything’s different. You know yourself when you have children or your wife gets pregnant, everything’s rosy and you’ve all these plans of what’s going to happen and what you’re going to be.
“But you’re not expecting one day for a total sea change one day and your whole life, what you’d maybe planned, is it going to go in a completely different direction?
”She’s been brilliant with him, and a lot of the parts of his development being so good is down to her and the time she spends with him helping him with it.”
Liam himself had been working in Belfast prior to getting a job as a project officer for Causeway Coast and Glens Council, based in their Limavady office 10 minutes down the road.
Hurling is still his outlet for eight, nine, ten months of the year, and Kevin Lynch’s are getting back to the stage where it might be the latter rather than the former again some day soon.
With the season over now, the former Derry dual player goes to the gym twice a week, and Clare goes two other evenings. They both attend Irish language classes separately, learning the mother tongue as Cara is attending Naiscoil Neachtain in the town.
“Times we’re like ships in the night but you have to do it. It can be very easy for your mental health to get affected by it. You need that outlet.
“We try as much as possible to get out. I’ve my outlet through training most of the time, and now the season’s over I try and get to the gym just to keep the head right. We both try and do the same.”
****************************************************
THIS morning at Kevin Lynch Park and O’Cahan Park, the hurling club will host the inaugural Ulster U10.5 tournament, with 23 different clubs from the province taking part.
They hope to make it an annual event, and their first chosen charity that they’ll aid through it is Epilepsy Action.
St Canice’s, for whom he has toiled on the football field throughout his career, did likewise recently with an underage football tournament.
Epilepsy Action is where the Hinpheys’ own fundraising efforts have been focussed over the last year. Liam raised just over £8,000 in a couple of weeks through a JustGiving page when he took on the Hard As Oaks challenge, a 10km assault course, with a few friends.
“I felt a wee bit of a fraud doing that because me and a few of the boys were planning to do that Hard As Oaks anyway for a bit of craic, but when we were doing it we said we might as well try and raise a few pound.
“I couldn’t believe how well it took off on the JustGiving page. Our initial target was £500, we only put it up a week or two before the event. It had £1,000 in the first couple of hours.
“The vast majority of the donations were either people from the Dungiven area or different GAA clubs, boys you were maybe fighting with down the years in different matches. You maybe hardly said a civil word to them in your life.
”But that shows how close the GAA community is, that they support their own in difficult times. That’s the same with both clubs, the hurling and football club. It’s a great sense of support when times are tough.
“You see it all the time, if someone dies it’s always the GAA club that rallies around and provides them with everything they need.
“It’s never asked for, that’s just how it is. It’s a brilliant thing. You never need for anything and never have to ask for anything, people will do it out of the goodness of their own hearts. It’s a great support.”
Every day that young Liam gets through without another seizure is a blessing. And they pray that, when they do come, they’re not severe enough to stunt his promising development.
Raising awareness of the condition and gathering up some much-needed funding for charities that are working to find more effective medicines is their contribution to the condition on a wider scale.
Life has changed dramatically over the last year. No parent would ever want to experience the panic and fear of their child having an unexpected seizure, to be standing over him waiting for an ambulance, not knowing what’s going on.
Each day they learn to aid his development as best they can, and as much as they know it might, they hope the seizure that stunts his promising development never comes.
But there’s a smile on young Liam that would light up any room, light up any life.
That’s what he does for them, every day.
