The moving story of former Carlisle Utd pro Brandon Gwinnutt, his brave son's rare condition and his bid to support the hospice that cared for him

His team-mates had gone home, but it was a five-hour train journey to Derby, and an expensive ticket on Brandon’s YTS wage.

Abbott, who was at Brunton Park assessing a trialist, was impressed with Brandon’s keenness for extra work. He took him on the training pitch and, in subsequent weeks, noticed him a little more.

That spring, the hard-working right-back was rewarded with a professional contract. “I don’t think I’ve felt happiness like it,” Brandon says.

It was a triumph for a certain mindset, a certain toughness.

When Brandon then left United the following February without having made a first-team appearance, he initially felt “crushed” but resolved to bounce back in life. This he did in non-league football, and in the scaffolding job he eventually found.

That also taught him about toughness, he thought.

It is now September 2019. Brandon is 24 and a father of two. The number is significant.

His daughter, three-year-old Liara, is happy and healthy. His son, Brandon junior, was born on August 21 and died on August 26.

Brandon is talking about the hardest time of his life with a courage that is hard to fathom. A month after he and partner Georgia lost Brandon junior, he is speaking to raise awareness of the condition he carried.

Edwards' Syndrome is a rare genetic disease, affecting one in 5,000 babies. Those affected have three copies of chromosome number 18, instead of two. This severely inhibits normal development and most babies die either before or shortly after being born.

As Brandon explains their story, he speaks for minutes unbroken and does not spare on detail. It is a young man discussing hurt, denial, tragedy and light: things they do not teach in football, or most other trades for that matter.

The diagnosis, he says, arose from a screening test offered at Georgia’s 12-week scan. When, after further tests, doctors delivered the results, the implications were initially difficult to register.

“I wouldn’t say we dealt with it for the first day or two,” Brandon says. “I probably tried to ignore it at first. Then, we sat down and just spoke. We were both scared. Neither of us wanted it to happen, but we made a kind of plan. We talked about what would happen in different scenarios.”

The option of terminating the pregnancy was turned down. “Because of the condition, it doesn’t really matter what stage you terminate,” Brandon says. “But we struggled to deal with the fact Georgia would still have had to give birth to him.

“We thought it would be better to give him a chance. And we both always wanted to meet him.”

As the days passed, Brandon researched Edwards' Syndrome on the internet, “just to try and get a bit of hope”, but knew there was a risk Brandon junior would not survive in the womb. Further scans confirmed evidence of the baby’s condition: a clenched hand, a cleft lip, a hole in his heart.

“The tests are said to be 99.9 per cent accurate,” Brandon says. “So while we hoped for the best, we had to make sure we prepared for the worst, and never tell ourselves he was going to be fine.

“One thing, though, we’ll always remember. Every time the midwife and consultant said there was an issue showing on the scans, he didn’t really deteriorate from it or show it was bothering him. He just soldiered on. When you think only a small percentage with the condition are born, he was defying the odds all the way. That makes you really proud of him.”

Brandon and Georgia had already been introduced to Rainbows Hospice for Children and Young People in Loughborough, and moved there from hospital when Brandon junior was born. “At that point, we knew what was potentially going to happen, but we were trying our best not to let it get in the way of making memories, being happy for the time he was there.”

In the hospice, they introduced Liara to her tiny brother. “We weren’t originally going to let them meet, because we didn’t want him to be there for her now, and then gone,” Brandon says. “But once he settled in Rainbows, and we knew what they provided for families, we made the decision that they would meet.

“We got to take photos, she got to push him in the pushchair – memories she won’t necessarily remember, but we’ll be able to tell her about. It was nice to be there as one family, rather than living two lives with two different kids.”

Brandon junior’s strength astounded his parents as, on his first day, he was able to have his feeding tube removed so he could breast feed. Brandon and Georgia slept in rotation rather than accept the hospice staff’s offer to watch over the baby while they both rested. “We were just so protective over him,” Brandon says.

The family continued in their bubble until, on August 26, their son’s breathing slowed. Then he slipped painlessly away.

“Once it happened,” Brandon says, “everything hit you all at once: the love you have for him, the happiness you felt, the sadness. The hardest thing was knowing he’d gone but not knowing what to do.

“It’s a bit of a cliche, but you don’t think stuff like that is going to happen to you. I don’t think it really sunk in until the funeral had happened. That was the time it hit me the most and I felt down. I think I was in a bit of denial then, too.”

Brandon and Georgia have been together for five years. “She is ridiculously strong to have coped as she has. She has her moments, like we all do, but she gets up every day and is the best mum to our little girl that I could ask for. We pick each other up when we need to, and she’s blown me out of the water in how she’s dealt with it.”

They also found the strength to create a JustGiving page before Brandon junior’s birth, so that they could support Rainbows – “an incredible place”. Sharing their situation beyond family and close friends was “very scary” but soon they were overwhelmed with messages and donations.

A number came from the football world. After leaving Carlisle, where he had been a youth team-mate of players like Brad Potts, Kyle Dempsey, Dave Symington, Jack Lynch and Josh Todd, Brandon played in his native East Midlands. His current club, Graham Street Prims, held bucket collections, Selston and Long Eaton made donations, while Ilkeston Town raised money and invited Brandon and his family to a game, where Liara walked out with the teams. At the game, they held a minute’s applause for Brandon junior.

There was also kindness from strangers. “Players I’ve never even played against have sent me messages,” Brandon says. “In that way, you appreciate just what the non-league side of football does. It’s a community, rivalries aside. They’ve all come together for me.”

Brandon and a friend also resolved to run the Robin Hood half-marathon for Rainbows. His pal has since pulled out with injury but Brandon’s sister will join him tomorrow on Nottingham’s streets. “The first few weeks of training were good, but before and after my son was born I kind of stopped,” Brandon says.

“It helps, mentally, running. The day after he’d passed, I went for a run to try and clear my mind, but since then I’ve only done one more.

“The hardest thing is trying to motivate yourself. I try and find every excuse not to go running. But I’m gonna get it done. I might not hit the time I was aiming for, but I’ll give it a good crack.”

These times have given Brandon challenges far greater than those he faced when his only worry was making the grade at Brunton Park. He loved his years in Eric Kinder’s youth team from 2011-13, but when Abbott was sacked early in his professional season, there were few opportunities under Graham Kavanagh.

“There was a time we had no other right-backs, but then he signed Pascal Chimbonda from non-league,” Brandon says. “Graham was honest with me, said it was his first job and he felt he had to rely on experience. About seven months in, we agreed to mutually cancel my contract.

“My short period of being a pro wasn’t necessarily what a lot of people think it is. They think everyone gets paid serious amounts of money and everything’s good. When you’re on the negative side of it, it’s different. I’d been away from home from 16 and didn’t have a game on Saturdays to look forward to.

“When I went home, I gave up on the game for a few months. I didn’t deal with it as well as I should have. All the hard work, time and effort I’d put in for so long had been crushed. But I don’t have any regrets and I wouldn’t change the way I live now.

“It would have been nice for it to work out, but I suppose everything happens for a reason.”

At home, in Derby, Georgia has a memory box in which the couple have placed Brandon junior’s scan pictures, hair and clothes. “We go and visit him at the cemetery,” Brandon says, “and when he would have been a month old, on September 21, Georgia lit a candle at 8.45pm, the time he was born.

“My little girl doesn’t say a lot about it, but she’s quite switched-on. She’ll point to a photo and say, ‘That’s baby junior, isn’t it?’ She’ll throw something like that in when you least expect it.”

Brandon says he would not wish the last month’s pain on anyone, “but it has taught me I’m stronger mentally than I thought I was. I do struggle from time to time, but it will get better.

“It also makes you realise what matters in life, what makes you happy, and what doesn’t.”

Brandon said he always wanted to give his own name to his first son. Each day without him requires some kind of step forward, but there will always be five that are caught in time.

They were perfectly captured on August 29 when, three days after Brandon junior’s short life ended, his dad posted a photo of his son on Twitter.

“Love you forever my perfect boy,” he wrote.

To donate to Brandon and Georgia’s fundraising campaign for Rainbows Hospice for Children and Young People, visit https://www.justgiving.com/fundraising/georgia-allison1