Author: Ginny Walker

When Ben turned eighteen earlier this year, it felt like a huge milestone for our family and maybe for me in my heart, too. Our children are all growing up and every time there is a milestone like this, the anticipation of it sometimes weighs heavy. That feeling of not being able to have a conversation with him, always wondering what he might be actually like now, what he might feel about the world as a grown up young man. What his interests might be and if they’ve changed much from six plus years ago?

I would like to believe that he would still adore movies, because he loved them and had a good grasp of stories and how films could make you feel. I like to think his humour would ripple through everything he turned his hand to and that laughter when he and the girls were all together would be loud and infectious.

Once the day had been and gone – and it was very quiet this year. I spent a lot of the day alone, as the family were all doing their own things and rightly so. Still, it gave me time to reflect and have a gentle day myself, which I did, thinking about and remembering Benny Beeps.

Many of his peers are now out in the world, reaching their own wonderful milestones in life, planning ahead, studying and travelling, imagining all that the universe has to offer them. It’s so magical and such a privilege to hear how his friends are doing.

I was chatting with someone today about this very situation. I know it’s hard. All of it. Grief. The feeling some days of sadness that Ben will never have the opportunity to achieve all he hoped and he wanted to do so much. However, I really believe that wherever he is now, striding the stars, he can see everything. He knows how the girls are getting on and as we celebrate their achievements, I feel he can draw closer. Sometimes we might even see a sign, like his name on a car registration plate or his favourite song on the radio on the day we are celebrating.

Sometimes, if I feel in pain in my heart, I try to feel each day more acutely, to look for the joyous moments, to laugh harder, to pay attention to the way the sunlight hits the trees or how my husband’s eyes screw up when he laughs.

Over the last six years of my own grief journey, I’ve learned how important living in the present moment can be and sometimes, the fear around letting go of the situation, the hurt, the unimaginable pain, maybe personal items, clothing, books … those end up being the very things that keep the trauma and sadness held stagnant in your body and you then feel you cannot move forward with your grief, let alone try and get on with anything else that might be waiting for you in your life path. It could be magic and joy and sparkles of light, but the agony of grief grips you so tightly, that you forget to enjoy the life you have yet to live for you.

In Ben’s 18th year, I have been determined to finish the memoir of his story and our family’s experience with cancer and I am so proud to say that I have managed it after seven years of writing on and off and I am now looking for an agent, in the hope of helping others walking a similar path.

While fundraising this year, it’s been important, again with him turning eighteen, to mark it in some way. Ben’s Epic 100 Days Activity Book is something that he was able to bring to fruition with me in its early stages, as we sat in Starlight Ward in Bristol during his stem cell transplant. And now, it feels right to try and bring it all together, so that next year, children on the wards when Ben was treated, can benefit from something that will keep them busy through the holidays and through treatment.

Time continues to fly by at a rate of knots and we continue to remember our son and brother and share little thoughts and moments, in the hope that it helps others to continue to speak their children’s names and know that grief doesn’t have to be an ending. It’s a changing of existence, it’s a transition and a time when you can grow.

I am so proud of all three of our children – our eldest and youngest in their creative and work endeavours. They are really finding their feet in life and doing brilliantly. Ben, as he strides the stars, I feel and hope, is living his life to the full where he is, while keeping a close eye on his sisters and sending inspiration from the skies.

 

Hi lovely souls,

I’m reaching out with a very special invitation from the heart. This is a new project for me and so, a first!

In memory of my incredible son, Ben – and as part of our Ben’s Epic Christmas Boxes campaign this year, which delivers joy and Lego-filled magic to children staying in the three hospitals where our Ben was treated for AML and a stem cell transplant – we’re creating something new. Something lasting. Something epic.

Ben’s Epic 100 Days Activity Book will be a beautiful, inclusive, imagination-fuelled A4 sized book filled with 100 creative illustrations – one per page – designed to uplift, distract, and inspire children newly-diagnosed with cancer or undergoing a stem cell transplant, as well as their siblings, during their toughest hospital days.

The Activity Book was named with 100 Days in the title, because 100 days is the magic number of days it generally takes for the patient to reach engraftment when the donor cells are beginning to work in their body and recovery is on the way.

The concept is simple:

I have a list of 100 imaginative illustration ideas – already prepared – each one, a short, inspiring sentence designed to spark creativity and imagination during long days in hospital. Many of these were actually suggested by Ben when he was going through treatment himself and he was very mindful of the way chemotherapy made him feel, but he loved the idea of an activity book to provide some creative entertainment during some very dull days.

I’m looking for 100 illustrators to each take on just ONE of these ideas — donating your creativity and heart to design a single black-and-white / colour illustration (think of a coloring page, puzzle, or doodle adventure). Some of these illustrations will be full page and some will be for borders only and will be for children between the ages of about 5 and 14 years.

The only request I have, is that your assigned brief is noted somewhere on the page or that you leave space available at the top for me to place it on the page — to guide and inspire the child engaging with your artwork, ie ‘Spend the day creating a den in your room.’

No payment. Just passion, community, kindness and legacy.

In return, your name (and website or social handle, if you’d like) will be proudly listed at the back of the book as a contributor — a permanent thank you for being part of something so meaningful that will help bring a little sparkle of imagination during uncertain times for children with cancer and life-limiting illness and their siblings.

How to submit: You can send your finished illustration to me in high quality JPG / TIFF in CMYK format. I’ll take care of compiling and formatting everything into a professionally printed book.

Fundraising is ongoing for #BensEpicChristmasBoxes as usual this year and I hope to raise enough outside of the sum for the boxes by close of Season 7 in December, to be able to complete the first print run for the Ben’s Epic 100 Days Activity Books in the Spring of 2026. This still means we need epic donations to surpass the figure of £6,000 for the Lego boxes. We’ve actually changed our target to encompass everything … and our overall target now stands at £7,000.

This book will be a gift to the three hospitals where Ben was treated, who are already eagerly awaiting the books. They’ll be included in every Epic Christmas Box — and available year-round for newly-diagnosed children and their siblings.

Would you be willing to say ‘yes’ to one page?
Your art, your kindness, your name — helping create something beautiful for kids who need it most. Please get in touch with me at contact@bensepicjourney.org for all the details!

You can find out more about Ben’s and our family’s story at www.bensepicjourney.org and we’ve just recently set up the fundraiser for this year’s Ben’s Epic Christmas Boxes Campaign here at https://gogetfunding.com/bens-epic-christmas-boxes-2025-season-7-fundraising-full-steam-ahead/. If you are able to share this post or our fundraiser or if you are able to make a donation, that would also be amazing, as we really are hoping to raise more for the books to be created and printed this year outside of the £6,000 we hope to raise for Ben’s Epic Christmas Boxes themselves!

Please get in touch if you’d like to be part of this special and rather epic creation!

Forgot to mention that the deadline is the end of this year so I can bring the book together in the early part of the New Year and have it printed in the Spring of 2026!

With deep gratitude,

Ginny Walker

Over the last seven years since we started our Ben’s Epic Christmas Boxes campaign just a few weeks after Ben had died in the summer of 2019, we have delivered epic boxes of Lego and gifts to the children on the wards where Ben was treated in Portsmouth, Southampton and Bristol hospitals.

It’s that time of year again and time is flying by, but we are ramping it up!

This year, we are expanding our creativity and hoping to raise extra funds for the Ben’s Epic 100 Days Activity Book, too. We are currently in the process of seeking 100 incredible illustrators who can help us by donating a one page illustration from an epic Activities List, in the hope of bringing an amazing book full of fun ideas to try or to imagine, to make the children’s time in hospital a little more fun.

We are still fundraising for our epic boxes of Lego and with just a few weeks to go now, we are keen to ramp up the donations! We realise we are a campaign and not yet a charity, but as a family who have been dedicated to this cause so close to our hearts each year, we hope that you can support us in any way you can!

Thank you, thank you, thank you xxx

 

 

I was well into labour on this night in 2007 and awaiting the arrival of Ella’s first sibling. At 5.40 am the next day on Saturday 4 August, later today, in fact, our only son, Ben was born in 2007 … in the lounge of our then home.

Tomorrow, well, later today, is his sixteenth birthday, or rather, would have been, had it not been for the unexpected leukaemia diagnosis, that came along when he was ten years old in June 2018.

There are a million thoughts rushing round my head this evening, thinking about what he might be like or who he might look like now; and what he would have studied in the end this last year. His peers are all finished with GCSEs and looking forward to the next wonderful stages of their lives, as they should be and life at this age should be exciting and all about friendships, bundling around with your mates and finding your identity, your tribe while making plans for a future of adventure and so much fun.

Later today, I will make a cake – his favourite – lemon drizzle; and at teatime, we will assemble to sing ‘Happy Birthday’ into the ether, quietly, still celebrating as he would want us to, all the while acutely aware of the silence when we finish singing. There will no whoops of excitement and joy around what gifts we would be giving and no giggling, as he blows out the candles and makes some quip about his hopes and dreams for the day and his future. Sweet 16, they call it. His beautiful older sister is almost eighteen now and these four years since his leaving us feels like all time and no time in the same moment. Difficult to describe, but something I feel certain many bereaved families understand and recognise this very same feeling as we do, on a daily basis.

So many emotions to grapple with at this time of year, knowing that his birthday is just six days apart from his anniversary and it’s hard; and we long for this not to be our reality, but it is.

And in all of the difficulty and heartbreak of losing our boy, there are so many blessings still to be seen, even if there is a huge Ben-shaped hole in everything we now experience without him physically here. I see my children, my beautiful girls, finding their feet, forging a path for themselves out of the heartbreak. They struggle from time to time, the language and words not always there, but the emotion fired out into the universe and I feel it. We all do, because it’s an unimaginable loss to experience.

This year, I have been quietly working on ideas and creative pursuits, some still under wraps! Family of Five, my memoir about Ben’s story and our own through cancer and into grief, is still in the final stages of being edited, but I am nearly there and I feel so proud that I have managed to put something into words as a legacy for our girls and a book that I hope other families can benefit from and find some hope.

My plan is to turn Ben’s Epic Journey into a charity in the coming months and I am currently on the look out for volunteer Trustees and interested parties to help steer and maintain the vision for this wonderful new stage in our Ben’s Epic Christmas Boxes Campaign. I am walking The South Downs Way (100 miles) again this year – starting on Sunday 13 August for a week, to kick off the fundraising for this year’s Ben’s Epic Christmas Boxes Campaign – our fifth year.

To celebrate Ben’s 16^th Birthday and to celebrate the lives of the (far too) many children lost to cancer and other illnesses, I am starting a new annual awareness campaign for the far too many bereaved families, as part of our future charity, an initiative called ‘My Child Lived.’

The idea (initially online based) is for bereaved families to post a photo of their child(ren) who died, on the 4th August on Twitter using the hashtags #MyChildLived, #FourthofAugust and #BensEpicJourney, to name them and tell us a little about what they loved in life, or what you loved about them. Say their name and know that you are loved and supported by a millions of other families who are in the same boat and you are not alone.

Happy Heavenly 16th Birthday, darling Benny Beeps, our star strider xxxxx

Well, this year the fundraising efforts have accumulated in an amazing result for Ben’s Epic Journey, despite all that we have been through as a collective. The incredible kindness and generosity of you all, has overwhelmed us.

We decided for our third year of fundraising to go for Lego boxes for the children in the three hospitals where Ben was treated, largely due to the continuing restrictions within hospitals and the need for gifts that could be easily wiped down before being given to patients.

We managed to raise just shy of £4,000 which we were thrilled to achieve under still such extraordinary circumstances. The generosity of friends, family and the wider community, means that we have been able to deliver over 70 boxes to the children staying in hospital at Christmas for our third season of trying to make a difference to the lives of these children and their families in our son’s name.

When we set up the fundraiser this time, I decided that we needed to really earn the funds this year, so in September, I walked the South Downs Way from Winchester to Eastbourne (100 miles) with a dear friend of mine. This kicked off the fundraising wonderfully and later in December, James put together an online auction, which raised £780. We were so impressed with the end result when we reached such a great total over all.

We delivered the Lego to Southampton first this year, then Portsmouth and lastly, to Bristol (The Grand Appeal Charity) on Christmas Eve for them to take to the Starlight Ward.

Once again, we found the whole experience brought the excitement of Christmas that has been felt in our household and yours, to the forefront, with us getting so much out of giving to these children. Having had the experience of sitting on a ward for six months, watching our child go through chemotherapy and the effect it had on our son and daughters, plus seeing so many other families in the same boat, this part of our year has become a fundamental cog in the wheel of our lives in the lead up to Christmas and is something we hope to build on in the years to come.

The feeling of mixed emotions standing outside the hospitals, as we smile each year, knowing we’re in a blessed position to be bringing such joy to those who might really need it, coupled with the immense love and sadness we also felt in our hearts, knowing that Ben isn’t physically with us, brought many tears and very philosophical conversations that day and we were so happy to be able to be travelling together, James and I, for the Bristol trip.

Over Christmas, our third one without Ben, we found this to be blessed with moments of laughter and gentleness amid the quiet tears in his absence. Our girls are growing up so fast and it still feels very surreal without Ben in the lead up to what our children have always found to be a special time of year. It was lovely to see them opening their gifts and enjoying time to relax over the Christmas break and we know Christmas is different now, but we try our best to still make it special for the sake of our girls.

In 2018, Ben was home just before Christmas Eve and our last Christmas was understated and one we were just so grateful to have, thanks to the efforts of the doctors and nurses and the miracle we received, which was an unrelated donor for Ben, earlier that year. We didn’t know it would be our last together, but looking back, it was just magical. We hope to continue to add some of the sparkle that abounded when the three of them were all together, as the girls get older and find their own path in life.

In the last year, we have created a video for DKMS for their Because of Ben campaign and continue to raise awareness for the need for stem cell donors. I had the great privilege of meeting some of the team and speaking to staff in December 2021 about our families story, which was an honour.

The video we created can be watched here: https://www.youtube.com/watch?v=ZnAySiLRXlA

This year, 2022, we hope to create the Ben’s Epic Journey charity, whilst continuing to make the need for stem cell donors, a priority, changing the narrative to something that becomes a natural conversation within families as part of growing up and being a compassionate and wonderful human being.

Thank you so, so much for your continued love and support and we will be in touch with more news very soon.

Wishing you all a magical, safe, happy and healthy New Year, full of gentleness, fun and hopeful adventures xxx

 

 

Well, it’s that time of year again and today marks 108 weeks since we lost Ben and yesterday was 25 months since he died. Grief seems to undulate in relentless waves. Some days you have what you think is a steady day, only to realise that the water was drawing back silently, only to hit you with a tidal wave the next day.

I’ve had people comment on my strength, our ability to cope as a family, our courage and determination to make a difference and be inspirational for others.

Today, as with every Saturday, close to 4.00 pm, when we are at home (which, in a pandemic is fairly normal now), James sets the steam train going and we sit, tell each other we love each other and watch the train as it pootles round the track below Ben’s bedroom window, each alone with our thoughts. Every so often at poignant times, Ben sends us a sign that he is around. Today, it was a dragonfly, landing on the chair for a few seconds as if to observe and marvel at all that his Dad has set up in his absence.

In recent weeks and months, it has been lovely to see our daughters begin to find their feet in their own lives. Time is moving forward and they are older now, not only in age, but in wisdom; the wisdom that losing their brother has thrust upon them. They are both fiercely independent, despite, hopefully appreciating our presence in times of need (who am I kidding? One teenager and one tweenager!) I feel sure that the impact of grief is something that we will only see in later years. Some children hold so much in and others find ways to distract themselves, immersing themselves in friendships, games and activities to allow their minds and hearts to focus on all that life has to offer them still. Anything to divert from the profound devastation of the landscape and sense of loss in their formative years.

It’s Childhood Cancer Awareness Month and we do our best to help raise awareness of the need for stem cell donors and the need for alternative and kinder treatments for children going through cancer.

Cancer will not define us, but grief has changed our family of five forever. It has brought us even closer, yet we are sometimes each alone in our own unique experience of loss. We keep the lines of communication open and sometimes James and I need only to share a look, to know how each other are feeling and no words need to be said.

Two years on and there are blessings, always, but the heart will always wonder what Ben might look like, even sound like now at the age of 14 years.

A couple of weeks ago, I had the privilege of spending time with my eldest and we were in a local establishment in Winchester for a drink and natter and as I was chatting to her, her face lit up in what I can only describe as surprise and shock. The look you only see when you’ve spotted someone you love in a crowd, who you’ve not seen for a long time.

She told me to turn round to the table behind us and ‘tell me that boy doesn’t look just like Ben!’ enthusiastically.

I turned and my heart could have burst on the spot. I had the same feeling reflected in my heart as I’d seen on her face. I turned back to her beaming, with tears in my eyes. This young boy could have been Ben at the age of ten years, before he was poorly. The way he was sat in the chair, his nonchalent look across to us, the flick of his light mousy brown hair, flopping across his eyes. As he left a few moments later, he was dressed like Ben would have been and even walked like him. This sort of experience has happened to me a few times before in my life and I always feel that somehow our loved ones are able to lean in to someone and show you their expression, just for a brief moment, to let you know they are still around, keeping a close eye on you. This is when I feel hope again. The fact that I was there to experience this with my beautiful eldest, was such a blessing.

So, as we turn sit in the afternoon sunshine, looking to the skies and thinking about the months ahead, I am forever grateful for our family of five and while I don’t always feel strong, I will always endeavour to shine a little light for others as best I can on this journey through child loss and hope that life still shows beautiful magic for my children as they grow and find their way into all that life brings.

 

 

Dear lovely souls,

Last year, due to Covid, we fundraised again and this time, sent Ben’s Epic Gift Vouchers into the three hospitals for the children staying in over Christmas.

It’s been an extraordinary year and not without its unexpected twists and turns.

Today I received a call from the lovely Hospital Charity at QA, who explained that while some of the vouchers were indeed given out over Christmas, there were some left over, as a member of staff responsible for handing them out is now retired.

The lovely lady who called me apologised and asked me if it would be ok to give them out this year at Christmas. In my heart, knowing that we will be fundraising again later this year … with any luck, for the boxes for the children, I suggested she take the remainder round to Starfish Ward in QA this afternoon and hand them out to the children in at the current time, who might welcome a distraction.

To that end, this is a short post to confirm that your wonderful funds raised are reaching the families we intended them for, but on this occasion, it has been a little delayed!

Sending love to all xxx

Life has a funny way of just happening, whether we are in isolation or not; whether we are trying desperately to come to grips with a reality none of us want to see, or whether we are nonchalantly continuing our routine day after day, unaware of the way events can overtake us at any given moment.

Ben’s experience with cancer has taught us a lot about each other; about humanity, kindness, compassion, inclusion, love and loss. We, as a family of five, continue to watch the waves break on shore, sometimes daring to step into the water and let the emotion of all that’s happened overwhelm us. Other times, walking in the sand as the waves lap at our feet, aware of the great ocean and constant reality of change alongside us; and taking every step, yet hoping to keep our heads above water, as we forge ahead in our new, reluctant reality.

In the months after Ben died, we set about focusing on the Ben’s Epic Christmas Boxes, which we hoped to create again last Christmas and did, but in the form of Christmas vouchers instead, due to the Covid restrictions. We had such a great response to our fundraiser, despite the difficulties we know everyone was having. It warms our hearts to know that the kindness and support is there for us and others. It’s amazing, in fact!

I’ve continued intermittently with my Podcast, Family of Five over these long months and also my book of the same title. I’ve come away from the book for a short while, too, while turning my attention to my second comedy following Hatch Match Dispatch. I have found that the heartache, as much as it’s been a labour of love to write Family of Five, has sometimes been too much for my broken heart to manage. So, letting it breathe has been a really good thing. I’m now back to editing it and will release it into the wild in the months to come.

In 2020, I put together an idea that Ben and I had worked on in Bristol about Activity Books for children in Autumn of 2018. Having found an amazing illustrator, who understands the journey we’ve been on and having had some input also from other cancer families, this is something I hope to put in motion, too in the coming days and weeks ahead by way of a fundraiser.

In addition, another book idea to support those bereaved will also be heading out into the world by way of a fundraiser and I’ll update you here.

We’ve been toying with the idea of setting up a charity alluding to special books and boxes, essentially, but while we are still looking into it and not wanting to be slowed down, the idea of fundraising for the time being, seems the way forward, as we recognise the last year for everyone with Covid, has been hard financially and if we are planning to start a charity at all, we want it to be the right decision for Ben and for our girls and family.

At eighteen months to the day that Ben died in my arms, we launched a video we created for a DKMS campaign called #becauseofben. We’d approached DKMS, who have supported us since Ben’s Appeal for a stem cell donor in 2018 and chatted to them back in November 2020 about the idea of raising more awareness by putting a video together with one of Ben’s and our family’s favourite songs to accompany it.

Months later, it was ready and you can see it here: https://www.youtube.com/watch?v=ZnAySiLRXlA

We were told they had had 42 sign ups off the back of it and whilst that number is poignant when it comes to ‘the meaning of life’ from one of Ben’s fave books ever – The Hitch Hikers Guide To The Galaxy – we know we can do more. It has been a real labour of love to create this video; and I know I won’t rest until stem cell donation is something we talk to our loved ones about from a young age, because it’s so important and is something you can do as an amazing human being for someone else … while you are living! If we educate ourselves and others, there could be a real change in a positive way, I feel sure of it.

Our girls are both managing as best they can without their brother. They have us as their anchor and yet, they are both setting sail on their own individual paths in life, just gently and it’s wonderful to see and makes us both very proud.

Living our lives without Ben is hard and every day I reflect on all that has happened, how our lives were and how they have changed irrevocably. I see Ben in the faces of his sisters and their mannerisms. I realise now that our youngest is the same height pretty much, as Ben was and I look upon her and imagine how tall Benny might be now; whether he might have put on weight again or remained fleet of foot.

When I am out walking some days, I can see him running ahead of me, or feel him walking beside me, just quietly observing, thinking and pensive. When the girls are giggling, the air becomes electric and for a moment, he could be right there with them.

It is an unavoidable and palpable absence that stays with us. I really hope he sees it all, everything we are doing in our lives, though I do feel he’s busy some days, elsewhere, living in an alternate reality. I feel he’s growing up and having fun.

If the choice had to be, be here with us and be consistently dealing with cancer, or be without us, but be free, light, without pain … then I will allow my heart to break over and over to ensure that light continues, even if we have to be without him. Cancer is not for the faint hearted and some days, I could scream at the world for taking my son, but what good would that do? It would change nothing and if Ben could see me, he would be so sad to see his mummy so unhappy.

I have always felt that although this is not the path I would have chosen, if it is to be my path and our path, then I would prefer that Ben sees me trying, in amongst the tears, to be a source of light to others in this extraordinary situation.

So, we move beside grief, gently, but remaining full of purpose to be able to help others who find themselves facing a child’s cancer diagnosis, in whatever form that may take eventually. If I’ve learned anything, it’s gratitude for all I have, all I had and all the blessings yet to come.

Always sending love to all xxx

 

 

 

 

 

Lovely people,

As some of you know, our beautiful son, Ben, was diagnosed with Acute Myeloid Leukaemia and Lyme Disease in June 2018. He subsequently underwent chemotherapy and a stem cell transplant from an Angel unrelated donor in October 2018.

He relapsed in July 2019 and died in my arms shortly after his 12th Birthday, in August 2019.

Last year, we created beautiful Epic Christmas Gift Boxes for the children on the three wards our Ben was treated in;

Starfish Ward, Queen Alexandra Hospital, Portsmouth

Piam Brown Ward, Southampton Hospital and

Starlight Ward, Bristol

This year, we have been in touch with the hospitals and understand that with Covid restrictions in place, our lovely Ben’s Epic Christmas Boxes will have to wait until next year.

However, not to be put off, we are setting up a fundraiser to raise money for Ben’s Epic Christmas Amazon Vouchers! This will be a safer option for the families and will still allow us to bring some fun into the ward in a different way for those who are unable to get home for Christmas.

If we meet our target which we’re just working out this week, we hope to offer Amazon cards to siblings as well (perhaps a slightly smaller token gift) and possibly make up a ward box of goodies for the staff in each hospital.

Any funds in excess of the target figure, will be donated to The Rhys Daniels Trust this year, who provided us with accommodation while Ben was receiving his stem cell transplant.

We’ll set up the fundraiser in the next few days. We know that times are tough and extraordinary this year, but we really hope we can find a way to make this happen for these children. It matters so much to us and will be another statue in Ben’s name of his legacy of kindness.

Love to you all xxxxx