Following the tragic passing of their son Ben back in 2022, the family set up The Ben Jay Butterfly Fund to support Young Lives vs Cancer.
Saturday marks Ben's birthday and supporters can donate to bucket collectors around the ground both pre and post-match.
Fans can donate to the online fundraiser by clicking here.
Sharon, Ben's mother, said: “Ben was a beautiful soul. He loved football, he was a goalkeeper for Cray Valley PM and a good one as well. There were a lot of teams that wanted him, but he was loyal, he stayed with his teammates. He started to become poorly, but never gave up his training - he stuck by it.
“Then the illness started to take over his life. All of his symptoms were kicking in, headaches and neck pain. I was taking him to the doctor and he was having trouble keeping food down. They took blood tests and his liver function tests were coming back high. The GP decided to keep testing his liver - he was being referred to paediatricians and nobody would pick him up. He had numerous times up the hospital in A&E, we paid for him to go private, and nobody picked up on his illness.
“On July 2nd I went into work and said that I would be home soon, he called me and said ‘Mum, I don’t feel great’. I got home and phoned 111, they got us up to A&E and we got rushed in and found that one doctor that listened to me. I was getting told that it was all in my head and that I was looking for it and that there was nothing wrong with him.
“They admitted Ben and on July 5th, 2021. They took him down and realised that Ben had 80% liver cancer. He had a lymph node on his heart and one on his pancreas. We got rushed to King’s College Hospital for biopsies to be told what form of cancer he had. It came through that he had a very rare form of cancer called Hepatocellular carcinoma - it affects two teenagers a year in the United Kingdom.
“If chemotherapy works you get maximum five years, if it doesn’t you get 18 months to two years. They started his treatment and they asked if he wanted to try the trial treatment, and at this point you’d take anything, you just want your child to survive. Ben said, ‘let’s do it mum, we’ve got this!’ We always used to have this saying, ‘I’ve got your back, boy,’ and ‘I’ve got yours, Mum.’ I had his back all the way through, I was his voice. At times it got tough but there were also times where he had that lets do it Mum attitude.
“I remember his first ever blood transfusion. He was laying there in the bed and he was watching the blood go into the tube and as it was going in, he was going, ‘oooh, wheeey!’ That was his sense of humour, he was so brave, he was my hero. I couldn’t have done what he done.”
Following his diagnosis, the family got in contact with the club and formed a special connection with Head of First-Team Player Care Tracey Leaburn.
“He started developing a lot of fluid, where he had to have a drainage tube. Whilst all this was going on, he was asked if he wanted to meet his favourite player Jake Forster-Caskey. Tracey Leaburn set that up and I remember when he first met Jake, there was a photo of Ben with Jake and Tracey and I looked at him and said, ‘Ben, have you got tears in your eyes?’
"He said they were talking about the cancer, and it got to him. He said, ‘I had the time of my life, Mum!’ It was from there that he had this connection with Tracey. I messaged her the other day and said that she gave him the best seven months.
“I still say that if it wasn’t for Charlton and Tracey, I don’t think Ben would have made the seven months. They kept giving him that stage to get to - he was booked in a private box and the owner came in and he was sitting there with his morphine lolly the whole time. Ben was a real character.
“They took him to the training ground and at that point we knew he wasn’t going to survive. He was on end-of-life care, but Ben didn’t know. Glyn Shimell was training the goalkeepers at the time, and came over to him and Ben said, ‘I’m glad you’re showing me their skills, when I go back I'm going to use them.’ It was heartbreaking, because we knew that he wasn’t going to. We let Ben have that dream.
“When he walked out on the pitch, that was the day! We were heading up for it and the fluid was beginning to build up, he was struggling to walk. He said, ‘Mum, what if I can’t get out the wheelchair?’ In which I said we’ll deal with that when it comes. As the players came out the tunnel, Jason Pearce grabbed him round the shoulder and said, ‘Let’s go!’ Ben flew out onto that pitch. I remember saying to my husband Garry, ‘Oh my god, the legs!’ When he came back, he said, ‘Mum did you see that!’ It was a dream, he had done it, he completed it.
“I’m so grateful for what Charlton did for him, they made his day and his world."
The Jay family will be holding a bucket collection for Young Lives vs Cancer at The Valley on Saturday ahead of Charlton's clash against Birmingham City.
"He was one of those kids that appreciated everything. Everything that people did for him, it was all about giving something back at the same time.
“When he was on end-of-life care, Charlton had raised money for us to make some memories. Ben had taken a bit of a turn, and it had gone to his brain. He was scared at that point, but he cracked on with it. He developed a blood clot where he was fitted with a draining tube.
"They did the drainage tube on the Tuesday and by Thursday Ben had pain in his arm, by Sunday the pain was so bad that I had to rush him up the hospital. We got him to The Royal Marsden on Monday morning and that is when we were told that Ben had two weeks to live. He was on immunotherapy at that point where they said that it would give us eight to ten months, but they told us two weeks.
“They said to go and make memories, but how can you do that? You could never look back on those pictures as you knew that is when your child was told they had two weeks to live."
In January 2022, Tracey announced that she was going to be doing a sponsored walk over The O2 to raise money for the club’s annual PSA testing at The Valley and Sharon explained how, despite his condition, Ben was full of support for Tracey.
“The next day, Tracey booked us to go to the zoo and stay in a treehouse. He got in the car and he was so poorly, but he was determined to do it. It was on the Wednesday, and he said to me, 'go and phone Tracey, Mum' because she was walking over The O2 on that Friday and Tracey was afraid of heights. There I am thinking, ‘Oh my god, you’re worrying about that!’ That Friday morning, Ben went in for a blood transfusion, all he could think about was, ‘Right, I have got to be at The O2.’ He went and they made him the VIP. He had such a fantastic time that night.”
Sharon also reminisced on the charity football game that was held in Ben’s name.
“Saturday he rested and that Sunday he had his charity football match with his teammates. There was so many people there, it was unbelievable. As I got him in the wheelchair and I wheeled him through he said, ‘Are all these people here for me, Mum?’ And they were. His little face lit up.
"He watched all his friends play football and you could tell that he would have gave everything to get on that pitch. Everyone was crying because they knew that it was probably the last time that they were going to see Ben. There he was smiling all night. Everyone was taking their pictures with him. He had a cracking sense of humour, a couple of his friends asked for a picture. He put his finger up and rubbed his jaw, then said ready with a smile. You couldn’t help but laugh. At the end of it they made an arch for him, as we wheeled him through they were all signing, ‘There's only one Ben Jay’. He was waving his hands like a conductor the whole time.
“We got in the car and that is when I said, ‘did you have a fantastic time?’ He said, ‘that was quality, Mum!’ For me, I knew he was going home to die because he had done everything. We got home and he couldn’t make it up the stairs for a couple of days. On Tuesday morning he woke up and said that he’d go and get into my bed. I got him up there and he didn’t really get up after that. Tracey came and saw him on the Wednesday and his friends were coming in every day. That Friday, even half-an-hour before he passed, he said to my daughter, ‘I feel like some toast.’ She came down and said that he wanted some toast, but he hadn’t eaten in eight days. We got back up there, and she said, ‘Are you trying to get me out of here?’ and he just smiled. He still had that sense of humour.
“My daughter called me, and I ran in, I got on the bed with him, and he passed in my arms.
“Every time me and Ben used to travel to Marsden he used to play the song, I Lived by One Republic. It wasn’t until after Ben passed and I was choosing his music, I listened to that song and now I know why he played it every time: he had lived. The lyrics, ‘when the crowd screams out, it’s screaming your name,’ the fans and his friends were screaming his name. In my heart I think Ben knew, he was playing these little things for me. He was guiding me. He is our hero, our warrior and a true legend until the end, never to be forgotten."
The family decided to set up a fundraising page in Ben’s name, donating all the money received to Young Lives vs Cancer, who provided vital support to Ben throughout his treatment.
“When Ben was in Marsden, we got connected with Young Lives vs Cancer. In our experience, I had to go on sick leave from work on statutory sick pay, and Garry was the main earner. When you do have a child with cancer, it's so stressful on your finances. There isn’t a lot of money coming in and the hospital was an hour-and-a-half journey. You can be in there any time from three days to two weeks. There was a time where we did three weeks in hospital, with one night at home. That's because they let him home to go to a Charlton game.
“Young Lives vs Cancer chipped in and helped us out financially. Making sure we got any benefits that Ben was entitled to or us as a family were. In the end I had to take out an IDA [Individual Development Account] instead of declaring myself bankrupt. They helped me with an IDA, that's how bad it gets. With Young Lives vs Cancer, they help the families out financially with anything that they need. For families travelling from far away, they have houses where they can put them up to be closer to the hospitals. In the hospital, the teenagers get tutors so they are not missing any schooling. When we lost Ben, we wanted to give them something as they helped us. We had the social worker supporting us a year after Ben had passed - that's obviously a finance in itself. All the money raised is to help keep Young Lives vs Cancer, or the social workers or any staff in there, financially capable to help any other families out there.
“From a parent’s point of view, the minute your child gets diagnosed with cancer, it changes who you are. When your child becomes terminally ill, you change again. I don’t even know who I am anymore. If I can give something back to those families still fighting, then I will. If we can help out in a tiny way, it will go a long way. That is what the money is for.
“We have got some friends coming to help us. This will be the third time we have done it. We will all be spread out along the main road, outside the shop and car park, we even try to collar the away fans! We stand there with our buckets, we don’t force people to donate if they don’t want to, we do not shake the buckets either. We will be out there with our buckets and Ben’s love heart balloons."
The Jay family has raised a total of £10,000 throughout the years and raised over £1,500 from Charlton fans during last year's fundraiser.
“We love raising money for these charities,” said Sharon. “If our help can save someone’s life or give that child the best life that they can have, that's what it is all about. From a parent’s point of view, it is the most heartbreaking and terrifying thing you can deal with. Your child shouldn’t have to go before you.
“When you do lose a child, the worst thing that can happen is your child being forgotten, you have to do everything to keep their memory alive. When people and fans remember him, I love that. It’s so comforting and special, I never want to lose that."