Ben and Reuben’s story

“I genuinely don’t know what we would’ve done without Acorns. The shock of a second child who was so profoundly poorly. I don’t know whether Jo and I would have survived that.” – Sam Williams

A parent never imagines that one of their children will receive a life limiting or life threatening diagnosis. But this became the devastating reality for husband and wife, Sam and Jo Williams.

In March 2020, against the backdrop of national lockdown, the couple from Kings Norton, welcomed a beautiful baby boy.

It was a time of celebration for the family, who less than a year before had tragically lost their beloved son Ben to a brain tumour. The proud parents named the new arrival Reuben, in Ben’s memory.

Soon however, the Williams’ world was turned upside down once again. Not long after being born, Reuben was diagnosed with a serious life limiting condition, completely unrelated to Ben.

#BensWorldCup

In 2018, the family’s story had captured the hearts of the nation. A video of Ben being presented with a replica World Cup in hospital had gone viral, and #BensWorldCup was trending on Twitter.

The video caught the attention of England captain Harry Kane who was competing in the World Cup at the time. Within a few weeks, Ben was appearing at Wembley as a mascot for England’s game against Spain.

Capturing the heart of a nation – Ben enjoys an ice-cream.

The publicity created a whirlwind of excitement; a positive distraction for the family and footy-mad Ben who was undergoing gruelling treatment for a rare brain tumour called glioblastoma (GBM).

Just a few months’ earlier, life was very normal for the Williams. But it was at Ben’s fifth birthday party that mum Jo first remembers noticing things about his behaviour that seemed odd.

She says: “Ben had a big party, lots of excitement. He’d spent about two hours bouncing on a bouncy castle, waiting for his friends to arrive.

“There were a few things about how he was behaving that day that made me think. I thought maybe he’s under the weather, or just tired at the end of a school term.”

Ben was in reception class and as the Spring term was ending, the family noticed he seemed run down. His speech changed, as if he had a cold, and Ben’s teacher commented on how distracted he appeared in school.

Facing the unknown

With increasing concern, the Williams took Ben to see a doctor who advised they go immediately to A&E at Birmingham Children’s Hospital.

Jo remembers how scared the family felt, as they faced the unknown: “I think by then panic had started to build because his behaviour was so different. We went to have a scan, and I could tell it was going to be big. The next thing is, we’re talking that it’s likely to be cancer.

“It was going to be a battle. Those were the words that the doctors used. It was going to be a fight. Things escalated really quickly after that.”

Ben underwent a biopsy and the family were called to a meeting at the hospital to discuss the results.

Dad Sam says: “They talked us through what they’d found and said it was a glioblastoma. Ben’s consultant said the outcome was ‘dismal’.”

Ben was put on a gruelling course of treatment that took over the family’s life. There were daily trips to the Queen Elizabeth Hospital in Birmingham for radiotherapy and Jo and Sam administered chemotherapy at home alongside numerous other drugs to help manage his condition. By the time the treatment started, Ben had lost the ability to walk and talk.

Sam says: “It was bleak. It was tough. But we never allowed ourselves to believe that we couldn’t save him. That was true right up to the end.”

Ben with his World Cup trophy.

Going viral

Soon however, Ben started to turn a corner and the family saw positive signs that the treatment was making a difference.

Sam recalls a pivotal moment that unbeknownst to the family would lead to worldwide attention: “It was during the World Cup in 2018 and we were on the way up to the Children’s Hospital for an oncology meeting. Ben was sat in the back of the car, and we were chatting away to him.

“Up to this point he hadn’t really got his words back, then in the back of the car we’re talking about the football and Ben just said, ‘I want the World Cup’.”

At the hospital, Sam told the medical team what had happened and thought nothing more of it. Then, on Ben’s last day of radiotherapy treatment, a surprise awaited.

Sam remembers: “All his hair had gone, but he was walking and talking really confidently, with a big smile back on his face. A lot of the symptoms we’d seen before had settled down. We went in for Ben’s last session and the place was adorned with England flags. They were all wearing England kits and they presented him with a replica World Cup.”

A video of the heartwarming moment was shared on Twitter and quickly went viral. In the evening it had 10,000 views, but by the time the family woke up the next day it had over two million – and the story had been picked up in America.

Sam remembers how the story snowballed: “It was one of the later stages of the World Cup. Harry Kane spoke about Ben in a press conference. Jordan Pickford talked about it, calling Ben an ‘inspiration’.

“It was amazing that Ben was being talked about by an England team preparing for one of the biggest games of their lives. Things went mad for a bit. It was really good because it gave us some positivity, some excitement.”

Mum Jo says: “It felt like a film, and we were characters being swept along. It felt like we were winning. It was a bit like we were the England team, Ben was the underdog, defying expectations. We thought ‘he’s going to turn this around’.”

Things felt like they were falling into place for the Williams. Ben’s response to the treatment was positive and doctors seemed genuinely surprised at the progress he was making. Dad Sam went back to work and Ben was able to return to school.

Sam says: “We thought we were winning. We started to plan for life after Ben’s treatment. That feels naïve in some ways now, but that positivity meant that Ben never, ever had any idea of the possible negative outcomes, because we didn’t even countenance it.”

Referral to Acorns

In November 2018, the family noticed signs that Ben’s recovery was stalling. By Christmas, Jo and Sam knew that something was seriously wrong and on the 27th of December, ended up in A&E with Ben. Ben’s cancer had ‘come back with a vengeance’.

More radiotherapy followed and the family managed to get Ben accepted on a medical trial.

Sam added: “Even then we were thinking there was going to be a magic wand, a silver bullet. Just a month before he passed, we were at our friends’ wedding and he was there with his suit on dancing, with a constant smile.”

Sadly, Ben’s condition began to deteriorate. A consultant from the Hospital recommended the Williams make decisions about where he would spend his final days. The family decided to bring Ben to Acorns hospice in Selly Oak, Birmingham for end-of-life care.

Sam recalls bringing Ben to the hospice for the first time: “We were at a level of nursing with Ben that was beyond our skill set. Then to come to Acorns and just give that box of medicines away. The staff said: ‘don’t worry about any of that’. They said: ‘just be parents’ and we hadn’t been ‘just parents’ for a long time.”

At Acorns, every need was taken care of, so Jo and Sam could concentrate on making the most of every precious moment with Ben.

The family were given the opportunity to have loved ones around them in a way that would never have been possible in hospital; something that holds immense importance as they look back.

Sam says: “The thing I hope Ben was aware of was that he had lots of people around him. All our friends, all our family came. I remember they were outside, having a picnic in the hospice gardens. So you have these two extremes of life. Ben was amongst that.”

Ben died at Acorns after just three days, on 17th May 2019, less than two months after his sixth birthday.

Dad Sam says: “I don’t know what we would have done without that service, without Acorns. I can’t believe there are places still around the country that don’t have access to organisations like that. Genuinely, it’s beyond my belief. I don’t know how anyone would cope.

“That was our first introduction to Acorns, and a tragically sad one. I never thought we’d have to go back there again and use them again.”

New arrival

In March 2020, less than a year after Ben had passed away and as the world was facing the reality of a global pandemic, the Williams celebrated the arrival of baby Reuben.

Reuben was the ‘perfect little baby’, but Jo and Sam soon noticed things that concerned them. He was having problems feeding, and at one point admitted to hospital with jaundice. Numerous tests and further hospital trips followed.

Then one night after a feed, as Sam was settling Reuben on his chest, his baby boy had a seizure. The family had experienced similar episodes with Ben and recognised straight away what was happening.

Reuben was rushed to Birmingham Children’s Hospital A&E. It was in the Children’s Hospital – a place they had been so many times before with Ben – that the family heard the devastating news that Reuben had a serious life limiting condition.

Reuben was diagnosed with epileptic encephalopathy, a rare genetic condition, completely unrelated to his brother Ben’s glioblastoma.

Sam says: “It’s at this point where we’re being told that we have a life limited child. For us to hear that a second time, it just floored us. It floored us almost into inaction.”

Reuben remained in hospital where his condition took a turn for the worst and doctors again recommended the family go to Acorns for end-of-life care.

Reuben wins an Olympic Award at Acorns.

The family were faced with the unimaginable scenario of losing a second child, but this time they knew that at Acorns, they were in safe hands.

Sam says: “There was relief that we’d be able to go to Acorns, where we knew that whatever happened, Reuben would be really well looked after.”

Amazingly, after two months at Acorns for the Three Counties in Worcester, against all the odds, Reuben’s condition stabilised and he was allowed to go home.

Today, three-year-old Reuben has highly complex needs and requires round the clock care. He is unable to walk or talk and is fed via a tube directly to his stomach.

‘Spa weekends’ at Acorns

Reuben visits Acorns hospice in Selly Oak regularly for short breaks, which Jo and Sam affectionately refer to as his ‘spa weekends’. The visits help give the Williams a break and mean they can focus more on Reuben’s big sister Lydia (7).

Dad Sam says: “It’s like an extension of the family. when Reuben goes into respite, we say ‘you’re going to stay with your aunties and uncles’. The nurses there, the way they look after Reuben is just beautiful.”

At Acorns the Williams have access to a wide range of services that the family now say they couldn’t live without. Lydia accesses support through the Acorns Siblings service and the family also receive care in the home from the Acorns Outreach team.

Whatever happens, mum Jo knows there’s always someone at Acorns she can talk to who understands.

She says: “Acorns is always at the end of the phone. We have this incredible family support worker, Fiona, who is always there to listen to me, any time I feel things are overwhelming me.

“It’s a place where I know I can talk about anything. I can talk about Ben, I can say Ben’s name and nobody looks awkward. It’s like a little bubble. That’s not always the case in the outside world.”

The Williams never imagined they would ever have to use a children’s hospice, but at the darkest point in their lives, Acorns stepped in.

Jo says: “At first, we didn’t want to be that family, to accept that we needed Acorns. I was scared of places like Acorns. It was something to fear. But when the unimaginable happens, they are just incredible.”

Dad Sam agrees: “Before Ben, before Reuben – when I drove past Acorns hospice in Selly Oak, I’d almost want to put blinkers on, because I didn’t want to think about what’s happening in there. It’s a place that for many people is synonymous with really sad things.

“And yes, for us our first experience was hugely tragic, but now it’s about life with Reuben, enabling him to have as full a life as possible.”

The Williams’ lives are now fully intertwined with Acorns and to them it’s inconceivable to imagine a world in which they didn’t have access to that support.

Sam says: “I genuinely don’t know what we would’ve done without Acorns. The shock of a second child who was so profoundly poorly. I don’t know whether Jo and I would have survived that, and what it would’ve meant for Lydia.

Jo adds: “I think Acorns is for us, the difference between sinking or swimming.”

The Williams are just one of nearly 1,000 families Acorns cares for every year across the West Midlands and Gloucestershire.

Every single day across the region, highly trained Acorns professionals make a profound difference in the lives of mums, dads, brothers and sisters, giving them the strength and resilience they need, in the face of some of the most challenging situations life can throw at them.

Stronger Together at Christmas

Jo and Sam are now sharing their story as part of Stronger Together at Christmas, the Acorns Christmas Appeal. It’s an appeal which aims to raise much-needed funds for the charity, which relies on donations and fundraising to continue.

For Dad Sam, the importance of children’s hospices like Acorns, and the need for local communities to support their vital work, cannot be overstated.

He says: “For an organisation that deals ostensibly with dying, the amount of lives that Acorns saves probably goes under the radar. They literally save lives. Preventing suicide if we’re going be brutal.

“The enjoyment, the hope, the family life, the support. Maybe that’s the thing that people don’t fully understand; that rather than being a place that solely manages dignity in death, Acorns manages the continuation of life.

“That’s probably, ultimately, its biggest power.”

To donate to the Acorns Christmas Appeal, visit www.acorns.org.uk/christmastogether

The Williams family are now sharing their story as part of Stronger Together at Christmas, the Acorns Christmas Appeal