The Benjamin Pritchard Foundation – Be More Ben http://bemoreben.org was founded in 2018 by Sarah and Shane Pritchard, whose 8-year-old son Ben died after battling a rare and very aggressive brain tumour called DIPG. I had heard of the charity and knew a little about it, but the catalyst for really looking into it came when Tristan of Doghead Designs was looking for sponsorship for his ‘Mountain Mission’, the charity’s first large-scale fundraising event, in 2023.
The Foundation supports the whole family affected by the death of a child from birth up to the age of 18 because, as Shane and Sarah sadly discovered, there is no informal, regular, ongoing support for parents who have lost a child, even less for siblings and nothing at all for other family members. Following Ben’s death, there were few opportunities to meet with other parents whose children had died. The counselling Sarah and Shane received through the hospital during Ben’s illness stopped three months after his death. All that was available was short-term or consisted of formal meetings once or twice a year. At a time when Shane and Sarah were having to cope with the most intense emotions, they felt at their most isolated and vulnerable.
It was a lonely time for the Pritchard family, and Shane and Sarah were determined to do all they could to support other parents faced with the loss of a child. Parents and families who engage with the Foundation can build their own support networks, access counselling and other therapies and have opportunities to create new memories whilst remembering their child who has died.
I was so impressed with the organisation – they receive no government funding or grants, and all their income is from donations and fundraising. They have no staff or overhead costs, and every penny gets spent on supporting parents and families whose child has died. Their range of support and activities is tremendous, and I was keen to support their work hence this blog post.
Of course, our starting point was Ben. Ben was kind, caring and gentle. He loved sport, especially football and would have played 24/7 if he could. Sarah told me of an occasion at school when he chose not to play at break time because someone was sitting alone on the friendship bench. He chose instead to spend his break on the bench. On another occasion, Simon and Libby, friends of Sarah’s with younger children Freddie and Ralph, came to the house to play. Despite the age difference, Ben loved playing with them whenever they visited and gave them some of his toy cars to take home. Freddie and Ralph have since outgrown them and passed them back to Sarah for her boys, Stanley and Frank.
Ben played for Portishead Town Sparks, who remember him with great fondness. They have adapted their football kit to wear red socks in Ben’s memory and have raised over £15,000 at the annual Be More Ben Family Fun Days dedicated to Ben. When it couldn’t go ahead in 2020, they organised and videoed a pass-the-ball challenge with help from professionals Frank Fielding of Millwall and Marlon Pack of Cardiff City, who both played for Bristol City.
Ben’s favourite team was Bristol City, and he loved attending their games. The whole team came to see him during his final days at the hospice, which, as you can imagine, made him very happy. All the players wore Children’s Hospice South West t-shirts with Ben 8 printed on them.
Footballers he had met from Nottingham Forest – where he was invited to tour the ground and meet the players while he was undergoing treatment – also made a special visit to see him.
The club dedicated the Bristol City and Nottingham Forest Championship match to Ben, and a message was displayed on the big screen before kick-off, along with Ben’s photograph. When City scored, they held up one of the shirts. There was also a minute’s applause at the match, where thousands of fans got on their feet in the stands to pay tribute to Ben. Portishead Town Sparks were flag bearers on the day of the match, and his schoolfriends organised a bucket collection at the game, raising more than £5,000.
Ben also took great pride in his appearance, he would be up early every morning to have plenty of time to perfect ‘the look’. Aftershave and hair gel were the order of the day. Sarah remembers an occasion when she was at school for a Parents’ Evening, and one of the male teachers stopped her on the way out, saying he’d like a quick word about Ben. That word was to enquire about Ben’s brand of aftershave, which his teacher rather liked. I could just imagine the scene, and it made me smile as it did Sarah when she told me the story. What to wear was never a big issue for Ben because, out of school, he lived in his Bristol City kit.
Sarah painted a picture of a physically fit, happy, healthy eight-year-old, living life to the full, who brought great joy into the lives of family and friends.
Saturday, May 6th was a normal day for Ben, he’d been playing in football tournaments for most of the day with his local team, and then in the afternoon, he’d gone to his friend’s house for a play date. When Shane went to pick him up, his friend’s Mum explained that Ben had been running downhill chasing his friend, and he had tripped, stumbled, and bumped his head. She had checked him over, as did Shane and Sarah, and as he seemed perfectly fine, they didn’t think any more of it.
The story of Ben’s illness started the following day, on Sunday, 7th May, coinciding with Bristol City’s last game of the season. The family were all season ticket holders and attended all the home games. Shane went to watch the match with his friends, and Sarah took Ben and Freya. Before this, Freya and Ben had asked to turn the garden shed into a den, so they went into Bristol early to buy some bits for their den. It was a happy day but one that turned into one of the most traumatic days they had ever experienced.
Ben and Freya got on really well together. Sarah explained that Freya was quite reserved, so she and Ben made a great team as he was confident and outgoing. He brought her out of her shell, and she could rely on him to always ‘go first’ or ask for things in shops. They would play football together in the garden and have ‘sleepovers’ in Ben’s room at weekends or during school holidays.
Ben came in from playing in the den with his sister and said he couldn’t lift one of his arms. Naturally concerned, the family called 111, who sent out a first responder who immediately called an ambulance. Ben was blue-lighted to the Accident and Emergency Department at the Children’s Hospital in Bristol.
At the hospital, Sarah explained that Ben had fallen the previous day and bumped his head, and initially, there was talk of concussion. They did a CT scan. The CT scan revealed a brain tumour. In utter disbelief, Sarah thought they must have made a mistake and asked for more tests. An MRI scan and an appointment with the neurologist were set up for the next day. Sarah’s father, Doug, took Shane home, and Sarah stayed in the hospital with Ben.
The results of the MRI scan the next day brought Sarah and Shane’s world crashing down around them. Ben’s diagnosis was Diffuse intrinsic pontine glioma DIPG – inoperable and incurable.
Sarah explained that DIPG is a brain tumour found in a part of the brain stem called the pons, an area of the brain at the top of the spinal cord. Diffuse refers to the fact that it is not a typical mass but rather tumour cells scattered throughout the pons. The pons contains the nerves and muscles we use to see, hear, eat, walk and talk, and is responsible for controlling our heart rate, blood pressure and breathing. Any attempt to remove cancer will affect live, working tissue and the body’s ability to maintain basic, vital functions, so surgery was out of the question.
DIPG is the second most common primary high-grade brain tumour in children, affecting twenty to thirty children annually in the UK. As well as being inaccessible surgically, chemotherapy is ineffective. Radiation is the most common treatment, but unfortunately, the benefit is only temporary and does not provide a cure. Ninety per cent of children die within eighteen months of diagnosis, and survival beyond two years is almost unheard of. The doctors predicted a life expectancy of between ten months and a year for Ben. He died on the 6th of November 2017, just six months after his diagnosis.
Sarah and Shane spent much time talking to consultants and, of course, wanted to know the causes of the tumour. The consultants explained that they do not know what causes DIPG; unlike other cancers, it is not caused by environmental factors or specific inherited genetic variations. They believe it to be related to issues with cellular reproduction. Research into understanding the biology of DIPGs and what makes them develop is slow, but work on evaluating new drugs in clinical trials to determine whether or not they should be used in their treatment continues. That said, however, paediatric cancers are drastically underfunded and receive less than 4% of funding spent on cancer research and treatments. This is significant because less than ten drugs have been developed to fight childhood cancer since the 1980s. In fact, less than 1% of all funding is spent on brain tumours despite them being the biggest killer in childhood cancers.
Ben and his family stayed at the Children’s Hospital until Wednesday but left knowing that the medics were trying to get Ben signed up for a clinical trial which they succeeded in doing. On Sunday afternoon, they got a phone call from a Professor Richard Grundy, Professor of Paediatric Neuro-oncology and Cancer Biology at the Faculty of Medicine and Health Sciences in Nottingham. Professor Grundy told them if they could be at the hospital at 9.00. a.m. on Monday, then Ben could be part of the latest trial. They packed a bag, booked a room in a city-centre hotel and set off with no other plans and little idea of what to expect.
While in Nottingham, the hospital arranged for Shane and Sarah to stay at Billy’s House in Wollaton Park – a CLIC Sargent (now called Young Lives vs Cancer) home from home and a free place for families to stay when a child is having cancer treatment. It was somewhere very comfortable and was just a five-minute walk from the hospital, which made life a lot easier. They remained at Billy’s House for three months.
Billy’s House offers accommodation for up to six families, and staying at the same time was another family whose son also had DIPG and was part of the same clinical trial as Ben. His parents were quite resigned to the fact that their son would die, something Sarah said she would never accept. It was unthinkable. Ben also remained very positive, knowing that Sarah and Shane were working with the medical team to do all they could to make him better.
During this time, Freya stayed with Sarah’s parents, Doug and Kay, in Portishead in order to keep life as normal as possible. Initially, Sarah and Shane went back at weekends, but as Ben’s treatment progressed, he became increasingly tired, so Doug and Kay would take Freya to Nottingham instead. As soon as Ben and Freya were back together, it was like nothing had happened. Ben was truly happy when Freya was there, and they laughed and joked, watched films and played in the garden at Billy’s house. Freya adapted to Ben’s speech and mobility changes so well and always had an eye on him to ensure he was safe.
Fortunately, Freya has a small group of very good friends who have looked out for her since Ben was diagnosed. Portishead Primary School were also fantastic at supporting them as a family, caring for Freya and also ensuring Ben’s friends and the whole school were supported during his illness and following his death.
In terms of exactly what she knew, Sarah had told Freya that Ben had cancer because she didn’t want her to hear it from another source. She ensured that Freya knew she could ask questions about any aspect of what was happening and always promised to answer truthfully.
Sarah described Freya as being incredibly resilient and wise beyond her years. She didn’t really ask much about what was happening and was very accepting of the changes in their lives, even when things didn’t go as planned. She was always calm and caring and helped Ben when he found treatment hard, which he did more and more as time went on.
After two months in Nottingham, Ben became quite withdrawn and wasn’t his usual self, and it was at this point that Sarah and Shane decided to take Freya out of school and move her into Billy’s House with them. This made a massive difference; Ben was happy again, and it felt right for them all to be together. Freya would go to his daily physiotherapy sessions with him for moral support as he became frustrated with his lessening abilities. Freya was also able to access some support from the hospital play therapists.
Freya and Ben were always very close, and finding out at the tender age of ten, that her little brother had cancer must have been a terrible shock, but Freya proved extremely resilient. From that day forward, she focused on doing everything she could to make Ben happy. They decided not to tell Ben that he had cancer. They told him that the doctors had found something in his brain affecting his arms and legs and that he would need to have lots of tests and see lots of doctors. Ben remained his kind, loving self throughout. At the end of his radiotherapy treatment in Nottingham, Sarah and Shane took him to build-a-bear for a treat, but he didn’t want to leave because, as he pointed out, they hadn’t bought anything for Freya.
The clinical trial that Ben was on opened at Bristol Children’s Hospital in July, so the family left Nottingham to continue the treatment from home. Sarah described it as a strange time. On one hand, being home was nice as they had their family and friends nearby, they had the comfort and familiarity of home, and from September, Ben was able to go back to school for a few hours and see his friends, which was lovely. On the other hand, it was very frightening. They no longer had daily hospital visits, and they didn’t know the teams well who were now caring for them. They didn’t have the security of being close to the hospital and in Billy’s House with its amazing staff and other families for moral support. Ben’s radiotherapy treatment had finished, so he just had daily chemotherapy, which they administered at home. Ben now went to the hospital once or maybe twice a week, whereas, in Nottingham, they had been in the hospital most days. It also brought home the realisation of how ill Ben was, especially given how suddenly he had become unwell. If they bumped into someone they had not seen in a while, seeing the shock on their faces and having to explain why Ben was in a wheelchair was hard. In Nottingham, where nobody knew them, it was a lot easier.
They continued with the clinical trial until September. Ben was quite unwell with his chemotherapy, and scans to show any reduction in the size of his tumour had been inconclusive. At this point, they decided to take him off the BIOMEDE trial. They looked into treatment in Mexico which, although had significantly better outcomes than any UK-based treatment, was expensive and risky as it was not regulated in the same way. They were also in talks with Ben’s consultant to try to find any other trials that would be suitable for Ben.
In October, the family were told that a trial in Great Ormond Street had opened up and had space for Ben. It was Freya’s 11th birthday on the 24th of October, and they had a day out at Slimbridge Wetlands Centre with the whole family, which was wonderful, especially seeing Ben and Freya with their cousins. The following day, Ben had an MRI scan booked as a pre-assessment for the new trial, and all being well, they planned to go to London the following Monday.
Sadly, the MRI scan revealed that Ben’s tumour had spread to other parts of his brain and down his spine. Two days after they received this news, he suffered a huge seizure at home, which resulted in him being admitted to the Paediatric Intensive Care Unit at Bristol Children’s Hospital.
At this point, they were told it was unlikely that Ben would recover from such a big seizure, and if he were to regain consciousness, he would be unlikely to sit up, eat independently or talk. The next evening, Ben regained consciousness. The following day he told Sarah he was hungry and was able to eat hospital ice cream! The medical team arranged for him to be transferred to Charlton Farm, run by Children’s Hospice South West, and they arrived there on Sunday evening.
The news that Ben was terminally ill was devastating for Sarah and Shane. They had always believed he would get better, especially after his stay in PICU, (Paediatric Intensive Care Unit), where he defied the odds and made quite a dramatic recovery. They had never considered that they would need the support of a hospice and, even on this occasion, had convinced themselves it would just be for a week or two until Ben was well enough to return home. On arriving, Sarah described walking into the hospice as ‘walking into a hug from a loved one’.
They found themselves in the most beautiful setting with wonderful staff; all the stress of thinking about care needs, hospital appointments, medicine or treatments was gone. All they had to do was focus on being Ben’s parents. Despite being very ill, Ben was very happy there, and the family had some wonderful memories. Ben was at Charlton Farm for the last eight days of his life.
Being at the hospice also meant they could spend precious time with Ben after his death which brought them great comfort. As a family, they were able to stay in a bedroom close to Starborn, which is the special room where a child can lie after their death, allowing family and friends to have a very peaceful and private space in which to say their goodbyes at their own pace. It meant they could go in to see Ben as often as they wanted. Freya and her cousins spent much time in the hospice before his funeral and the sibling team at the hospice managed their expectations about what the funeral might be like, they even helped them to write a poem which was read out at his funeral. They decorated Ben’s room with photos and football shirts, and Sarah would update him on all the football scores and read him some of his favourite stories.
The day after Ben died, Sarah remembered asking a member of staff at the hospice if there was another mum or anyone she could talk to who had been through what she just had. Sadly, due to GDPR, of all things, they couldn’t put her in touch with anyone. Sarah just wanted to know that she would be able to get through the next few days without Ben. At this point, she made a note that this had to change.
Sarah described the days after Ben died, before his funeral, as a blur of planning, meetings, tough decisions and heartbreak. They had to plan a funeral, something they had never done before or ever imagined they would have to do. They hadn’t even discussed it together. The hospice helped massively with this, providing contacts and ideas and supporting them through it all.
The end-of-life support offered by the hospice ensured that they were better prepared, well-informed and fantastically supported for the toughest and worst imaginable situation. Sarah remains eternally grateful for all that they did. I was so pleased to hear that the family had this support during Ben’s final days because what followed was woefully inadequate and is the reason that Sarah and Shane established Be More Ben.
So what exactly did that support look like? They both had one-to-one sessions with a clinical psychologist at the hospital, both in Nottingham and in Bristol. Although Sarah would only go every now and again, for Shane, these sessions were vitally important, and he went at least weekly. When Ben died, the first thing they were told in this session was that one in four marriages end in divorce following the death of a child and that now that Ben had died, they could only continue the sessions for another three months.
Shane was referred to The Harbour, counselling for people facing death, dying and bereavement in Bristol. There was a waiting list which is quite normal, but during his first session, it was clear to Shane that these were not going to be suitable. Whereas before, sessions had taken place with people who’d met Ben, who knew the medical teams they were working with and who understood life in a hospital and really knew about losing a child, the Harbour did not. Shane had to start from the very beginning, which was painfully difficult so soon after losing Ben. At one point, while he was talking, the therapist looked at their watch and stopped him mid-sentence to say the session had ended. That was the first and last time he went.
They had visits from some of the teams they had met while Ben was ill. It was very unfortunate that their key worker at CHSW retired just after Ben died, and one of the other members of staff who cared for Ben went on maternity leave, so it was other people they saw. They also saw their social worker from CLIC, but she moved away not long after Ben’s death.
These individuals would come to the house, and Sarah welcomed seeing a familiar face, someone who knew Ben and knew things about him that no one else did. but as time went on, it felt different, it felt there was little point to the visits. Sarah explained that at times when her grief was overwhelming and she was angry with everyone and everything, it irritated her immensely that they’d come to the house. She’d make them tea and entertain them for an hour or so with chit-chat, and then they’d leave. She and Shane both felt that they got very little from these visits, and they fizzled out over time.
They did get some details of meetings and groups for bereaved parents soon after Ben’s death, and they went to a few. Sarah remembered one being at an art exhibition which was about an hour’s drive away; at the same event, they were given the opportunity to ‘milk a goat’.
Equally bizarre were meetings with the ‘purple group’, which took place at a big city hotel. The reason for the name was so that no one in the hotel would guess who they were or what they were discussing. Sarah explained how daunting it was to think of attending somewhere so formal, with a list of rules, one being that anything discussed in the room should be strictly confidential and couldn’t be discussed with anyone outside of the meeting. They both felt as though there was a huge element of secrecy and shame associated with the group, which was a complete anathema to them. They didn’t go.
Sarah described less formal meetings where you could only talk if you were in possession of a lavender bag that was passed around!
And then there were the many meetings that were promised but never happened due to staff sickness, shortages or lack of funding… when you’ve lost a child, being let down feels like a secondary loss; it’s very hard to take.
They left the hospice to go to Ben’s funeral and never returned. That evening, they stayed with Sarah’s parents and remained there for a couple of weeks. Sarah found the days following Ben’s funeral very hard to recall. She knows they collected their puppy, Freya’s birthday gift, that they couldn’t give to her on her birthday due to Ben’s hospital appointments.
Time passed, but they still didn’t feel ready to return home. They felt they needed to be on their own as a family to process what had happened and get away from everything. They booked a house in St Ives right on the beach, this is the view from the house and every day they would draw the Ben 8 image in the sand. Being the end of November, the weather was rough, but somehow being in the elements, by the sea, felt grounding and restorative. St Ives was quiet, so they had space to reflect and be alone. They spent eleven days there following Ben’s funeral, and they return to the same place most years now – the worse the weather, the better!
By the time they got back from St. Ives, it was December. Freya returned to school, and Sarah and Shane slept. The exhaustion was something they had never experienced before. They would get Freya to school and sleep until it was time to pick her up. This went on for quite a few weeks. Friends would deliver meals to their door, which meant there was always food on the table. They helped with Christmas presents. There was always someone on hand if they needed anything. Sarah was absolutely adamant that they couldn’t have got by without the support of their amazing family and friends.
At Christmas, an old school friend was visiting her family from her home in Australia. She got in contact to say how sorry she was about Ben, and although she couldn’t physically do anything to help them as a family, her home would be empty over Easter, and rather than Airbnb it, she offered it to the family while she was away. So, they went.
Going to Australia was the trip of a lifetime! The day before they set off for their month-long trip, Sarah discovered she was pregnant. Yet another unexpected turn on their rollercoaster life!! They stopped off and visited Singapore, they visited Sydney and spent a fortnight on the Central Coast.
They finished their time away in Hong Kong. Sarah described being away from home in unfamiliar surroundings as somehow familiar, especially in Hong Kong, with its crowded streets, not understanding the language or being able to read the signs, and of course, Hong Kong having its own set of unique cultural customs and habits. They felt so lost, which mirrored their emotional state. It felt right.
The story of beautiful Ben is heart-breaking, something that no parent should ever have to endure, and the organisation that Sarah and Shane have set up is a lasting legacy to Ben’s memory. Tremendous thought has gone into the shape of the organisation, which recognises the impact of the death of a child on all family members and acknowledges that the grief can be all-consuming and support may be needed for many years.
The Foundation offers two arms of support the first is ongoing counselling with highly qualified counsellors experienced in working with parents who have suffered bereavement and loss. These sessions are available by referral from hospitals, hospices, and doctors’ surgeries, and people can self-refer. Counselling and play therapy can also be arranged for children. EMDR sessions, a therapy new to me, are also available. If this is new to you too, and you’d like to know exactly what it consists of, then the link is here:
The second are peer-led, informal, reliable opportunities for parents and families who know exactly what it is like to lose a child.
There are regular, informal coffee mornings for bereaved parents to meet with others and virtual parent meetings that offer additional support and can be accessed from anywhere. Sarah recognises that every person’s grief is individual and unique, but the understanding and empathy from those who have lived through the same trauma is beyond measure. Friendly, informal Sunday lunches are organised for families, including grandparents, aunts and uncles, the very people who not only have to cope with their own loss but often have to provide the majority of the support for bereaved parents and siblings. You can see how close Ben is to his Grandad in this beautful shot of the pair of them in the Bistol City Board Room prior to a match. Just look at those matching ties! A wonderful shot.
I was pleased to see that there was a group for Dads because society’s expectations and traditional gender roles often mean that males, in this case Dads, are less likely to discuss or seek help for their mental health. Depending on numbers, this invitation is extended to other male family members: step-dads, granddads, uncles and older brothers.
Recognising the healing power of creativity, there are creative workshops for parents as well as groups specifically for bereaved siblings. They leave with something special to cherish, having spent the session making connections with others who have lost someone special. Interestingly, there was a real upsurge of creativity during the pandemic amongst children and adults, which helped to process feelings, reduce stress and anxiety, and give a sense of purpose.
There is also a special Family Day each year with many treats for bereaved siblings and a family picnic in the summer.
At a time when you are probably at your lowest, both mentally and physically, it is a time when you need extra care, but if you have cared for your child when they were ill, you may find taking time for yourself very difficult. To this end, Be More Ben offers wellness events throughout the year, including yoga and meditation, complementary therapies, online classes and mindfulness sessions, and wellness events and retreats.
So far in 2023, they have run seven support groups, including creative workshops, dads groups, sibling groups, yoga classes and coffee mornings which have been attended by over ninety people. They have provided therapy sessions for nineteen people.
They have some individuals who travel over an hour to attend the groups highlighting the need for this type of support. As well as local families, they support families as far as Swindon, Yeovil, East Sussex, Devon and Cornwall.
What started out as Sarah having a cup of tea with just one other mum whose child she knew had died, Be More Ben now supports over 100 families representing around 500 people across England and Wales. They are running 25 peer-led support groups this year.
They have raised approximately £165,000 since they set up the charity, and they hope to raise £25,000 for the Mountain Mission 2023. It costs £25,000 a year to provide counselling therapy alone.
Back to Tristan and the Mountain Mission! Be More Ben offers so much, and the need to raise funds is constant.
The Mountain Mission Challenge is the is the brain child of Nick Stone seen below next to the most stunning shot from the top of Helvellyn. It’s open to fifty people – including a number of Be More Ben parents who access support through the foundation and are walking in memory of their own children – takes place in the heart of the Lake District National Park and consists of a 15-mile walk, ascending 5,000 feet and taking on eight of the biggest and most beautiful mountains in the Lake District, notably Low Pike, High Pike, Dove Crag, Hart Crag, Fairfield, Dollywagon Pike, Nethermost Pike and Helvellyn.
Participants will be based at Rydal Hall in the village of Rydal near Ambleside. They have to pay a registration fee of £50 and commit to a fundraising pledge of £500. It looks gruelling, and I’m sure it will be challenging, but I’m equally sure it will be the most rewarding and inspirational event. The Mountain Mission, with an overall fundraising target of £25,000, will enable Be More Ben to cover the cost of their support for one year.
Such is the reputation of the Foundation and the work they are doing that finding fifty participants was not difficult. Finding sponsorship in the current economic climate will be trickier, and this is the link to the main campaign page. All of the fundraisers are part of this campaign, and any money raised goes into one pot. You can find details of all the walkers and read why they have personally chosen to embark on this challenge from here https://www.justgiving.com/campaign/bemorebenmountainmission
They also have teams running in the London Marathon, the Great Bristol Run – 10k and ½ Marathon and the Bath ½ Marathon. There are still a couple of spaces available on the ½ marathons, and as other fundraising events are announced, I’ll make sure to publicise them on Facebook @FACESofclevedon and Insta @facesofclevedon.
All the best to the participants running in these events and all the best to Sarah and Shane, who have created something wonderful out of the saddest of life experiences. #bemoreben