Mother: ‘It’s treatable and curable.’
Father: ‘It’s treatable and curable.’
IN life, there is no better journey on God’s earth than a parent watching their child play sport.
When Saturday comes, you never feel more alive.
Dylan Hume has just turned nine. A keen sprinter and your average ball of energy.
Roughly two-and-a-half years ago, he joined Glengormley-based football club St Mary’s, and his world became one of infinite possibilities.
It was really by chance Dylan took up football and became the defensive lynchpin of the St Mary’s 2015 Sharks team.
Ross and Claire Hume were at a friend’s for a barbecue and a new kit for the 2015 boys’ team had just arrived at Paul Doran’s house.
Paul asked Dylan to try on one of the new sky-blue jerseys and it fitted him like a glove. It was like young Dylan was born to wear the St Mary’s jersey and was no sooner experiencing some incredible highs he never knew were possible.
Within a few minutes of modelling the new jersey, a phone call was made to the 2015 coach of St Mary’s and Dylan and his dad were immediately recruited - one as a player, the other a coach.
Father and son were about to embark on one of life’s most fulfilling journeys.
Heading to ‘the Valley’ 4G pitch became their weekly pilgrimage.
“The first thing about it is, it’s exciting,” says Ross. “Because I’m responsible for a whole load of kids, organising them, I get excited. But that pales when you compare it to Dylan’s excitement for a game.”
Over the last couple of years, Ross has kicked every ball from the sideline for his son. The joy he’s got from watching Dylan play on the right side of the Sharks defence is incalculable.
All he knows is that in those 40-something minutes of the game, both father and son are living life in the fullest sense.
“Football has given Dylan so much confidence,” his father proudly reveals. “He wouldn’t have been a footballer, but he’s really grown.
“Dylan’s very young in his year, the tail end of November. At the start he was very nervous, it was overwhelming for him.
“Now he would take on anybody and it’s given him a whole new set of friends too…”
When Dylan makes a clearance or a tackle during a game, he’d glance over to the sideline.
His father’s approving nod was all Dylan desired. It was their code, their bond, their game, a time and place that nourishes the soul.
“Even in days when results don’t go our way, Dylan tries his very best, and he’d ask me, ‘Did I do good dad?’ It’s just so rewarding.
“We’ve been thumped, totally thumped in games, but we’ve maybe stolen the last goal – and that’s like a win for those boys.
“Even just silly things, like putting three passes together, something they’ve practiced in training, and seeing their wee faces beaming...”
Ross adds: “I’m not going to lie, sometimes it’s tough whenever you’ve got 36 eight-year-olds and nine-year-olds running about going feral, but the game days, especially the wee tournaments, it’s great. They just get so much out of it.”
JULY 10 2024 is a date etched in the hearts of Ross and Claire Hume. Dylan had been feeling tired for a few days but today more than usual. For a kid that doesn’t normally do tired, the antennae of his parents were duly raised.
This is the deal at home: Dylan and his elder sister Nicole earn their screen time, whether it’s “play with each other, read a book, tidy their room”, but Dylan couldn’t shake the tiredness and never went near his Xbox.
Claire, his mum, noticed some bruises on his legs. But he plays football, the kid is going to take a couple of bangs. Nothing to be alarmed about.
But because of Dylan’s unexplained lethargy they decided to take him to their GP. Just to be sure.
The doctor there didn’t like Dylan’s pallor and advised them to go to Antrim hospital to get some bloods done.
Everything was still calm.
“They took bloods and the next thing they came back after about an hour and said: ‘We’re not sure about those results. We’ll take more.’
“We were wondering: has he got a bit of anemia? He’s obviously got some sort of infection that was slowing him down for a bit.
“I had my own hospital appointment that day, so I left to go as we were awaiting the results of the second blood test. My wife and daughter were with Dylan.
“I drove the whole way to Stranmillis and the next thing my phone rang.
“It was the hospital. They needed me to come back. At that point I knew there was something wrong.
“I took the call on hands-free; I pulled the car over and I said: ‘You need to tell me what’s wrong. Put Claire on the phone’.
“They said: ‘We want to talk to you and your wife while you’re both here.’
“I felt sick. I rang Claire and said: ‘Put me on speaker phone.’
“There was no way I could make a 40-minute drive thinking about this. I’d crash the car, because I’ll either be going too quickly or I’ll not be focused on anything else.
“So, at that point they told us Dylan’s blood levels were so low that they were looking at three possibilities, the main one being Leukemia...”
An ambulance ferried Dylan to the children’s hematology unit in the Royal Victoria Hospital, with a diagnosis still to be confirmed.
“They said his blood levels were so low they were surprised he was still standing.”
The waiting was the worst part. A couple of days passed, more bloods, keeping Dylan’s spirits up, making light of the situation, weary, anxious and powerless.
“We were later told it wasn’t Leukemia. At that point, the relief was unbelievable. And then they followed it up with ‘but what he has got is Aplastic anemia.’”
Like a light switch, the lives of Ross, Claire, Nicole and Dylan collapsed around them.
Like a thief in the night, Dylan’s happy childhood had been stolen from him by this rare, life-threatening blood disorder condition that affects two people in every one million of the population.
At any time in Northern Ireland only four people will be battling Aplastic anaemia. Dylan is one of them.
Aplastic anaemia leads to the bone marrow not producing enough blood cells - red, white and platelets.
The condition can be inherited but is more commonly acquired and can develop at any pace.
To date, Dylan has undergone five operations and had, at the last count, 47 blood transfusions. His immune system is non-existent.
“The way you fix this is a bone marrow transplant [stem cell transplant],” Ross explains.
“Now, the complexities with that are you must find somebody that’s a perfect match for it to be viable, and even at that, it might not be.
“But your bone marrow kicks off again and you get your immune system back. You start producing everything.”
Dylan is a couple of months through Anti-Thymocyte Globulin [ATG] treatment which is designed to suppress the immune system and gives a person’s bone marrow time to heal and make blood cells again.
Experts say two out of three patients respond to it. It’s not a cure but can lead to remission.
Since July, Dylan has spent roughly 95 per cent of time in hospital.
It’s been a torturous road for the dashing young St Mary’s footballer who got home on his ninth birthday - November 25 - after being in hospital for a month.
Because he’s open to infection, the family self-isolates as much as humanly possible. His burgeoning football career has been paused and P5 is going on without the renowned class livewire.
On his birthday last month, the Glengormley Integrated Primary School pupils from P4s upwards walked by his house and sang happy birthday.
Dylan summoned the energy to stand at his front door and was able to look into the eyes of his friends for the first time in six months and, up to that point, he’d only communicated with them through Xbox.
Dylan doesn’t have to earn his screen time anymore.
“We’re hyper-careful,” says Ross. “We’ve changed our whole lifestyle. Dylan doesn’t go out except to the hospital. People can’t come into our house anymore.
“There aren’t any shoes either. The dog’s feet get cleaned with anti-septic wipes when she comes in the back door. It’s exactly like COVID.
“My wife doesn’t stop cleaning, wiping door handles down. We don’t touch his face, and we make sure he gets his five medicines in the morning and five at night.
“He’s got a feeding tube in to help him get his nutrition, because his appetite isn’t good.
It feels their son is permanently hooked up to IV antibiotics and antifungals with no respite.
Dylan has many bad days. Ten-hour shifts in hospital are the norm. Constant temperature spikes. Feeding tubes. Needles mercilessly puncturing his flesh more times than he’d care to remember.
Kids are intuitive too. It’s the big conversations every parent dreads.
“Dylan is a happy child but has his lows like everyone else. It’s obviously affecting him, but he does well.
“He knows he’s got a sickness, and he knows that he’s okay for now, but every so often he’ll have a very upsetting conversation, and it’s usually with Claire.
“It’s very, very difficult whenever he’s scared. That’s the toughest bit. I don’t really know how we do deal with it, we just kind of do.
“Claire is amazing, so strong, and she’s able to reassure him, but there are lots of times when he’s very upset and inconsolable. He says he hates it and doesn’t want to be sick.”
Through all the desperate sadness since July 10, the endless twilight sleeps, the weight of the world on their shoulders, there is light in this story.
Amid everything, they probably don’t realise - but Ross, Claire and Nicole are Dylan’s light – the most stubborn, unrelenting kind.
And young Dylan reflects his light back at them. You see, one light can’t exist without the other. And they keep faith in all their tomorrows.
Ross Hume can’t do justice to the care, kindness and love Dylan has received by the doctors and nurses and the support of the various charities.
Throughout Dylan’s journey St Mary’s FC haven’t forgotten about “Sergio Ramos” of the 2015 Sharks. How could they?
Sponsored walks and 24-hour cycles are just some of the events that have been organised by St Mary’s to not only support Dylan and his family through this difficult time but spread awareness around blood donations and signing up for the stem cell donor list.
“St Mary’s have been unbelievable,” Ross says. “Their kindness… the support they’ve managed to drum up. Even getting the eyes on this in terms of blood transfusions and bone marrow donations.
“The amount of people who have been swabbed is incredible. It is actually overwhelming. St Mary’s did a walk for Dylan. I couldn’t even hold myself together when I saw the amount of people that turned up and all his wee team-mates. It was just a beautiful, beautiful thing.”
“Treatable and curable” - two words the doctors uttered to Ross and Claire when Dylan was diagnosed and reverberate still.
Someday father and son will resume their weekly pilgrimage to ‘the Valley’ pitch. His sky-blue jersey will never feel so good.
Clasping each other’s hands ever so tightly, a final pep talk, as they walk through the gates, two hearts beating faster, Dylan Hume will take up his defensive position in the Sharks team.
This is how fathers and sons were meant to live. When he wins that first tackle, Dylan will know he’s come out the other side, and he’ll glance to the sideline for his father’s nod.
It’s all he ever desired.
Win or lose, a warm embrace at the final whistle.
‘Did I do good, dad?’
‘You were excellent today, son.’
The drive home was always perfect anyway.
When Saturday comes – for father and son.
Useful websites: For bone marrow testing visit DKMS.org.uk/ and giving blood visit nibts.hscni.net/online-booking-for-blood-donation-appointments/
