Remembering Sepp

Sam’s son, Sepp, very sadly lost his battle with ATRT, a rare brain cancer in October 2022, when he was just three years old. Sam, from Epsom, Surrey, talks about Sepp and how he has been learning to navigate life since he died.

“Sepp was a wonderful little boy – he had such a kind soul. He was sensitive and shy but warmed up once he was familiar with people. He loved being around people and was always chatty (in his own unique language). He was such a happy child with a constant smile on his face. He loved cuddles and his favourite toys, such as Ryder, his Duplo food bricks, Bing ruck sack, and all things Peppa Pig. He was always so proud when he achieved new things and loved to grab us to show what he was up to.

When we received Sepp’s cancer diagnosis, it felt like the end of the world. It still breaks me to think of that time and wondering if we could have been more aware of the signs.

We first heard about Momentum when one of their Family Support Workers at Epsom Hospital reached out to my wife, Kati, to talk about how they could help us. I remember the rooms in Casey Ward decorated by Momentum, which I found comfort looking at and counting the owls on the walls.

The final few days of Sepp’s life were numbing, to be honest. From the Monday morning onwards (he died on the Sunday), it was resignation that he was no longer conscious. Kati didn’t want to leave his side, but for the first time in weeks, I decided to get out of the house a bit, go cycling, see people, because there was nothing more I could really do. We received so many visitors during the final weeks, and that made it, in someways a happy time.

Getting used to having one less person in the family is difficult. We’ve all dealt with our grief differently – Kati went straight back to work and my older son Tate didn’t take much time off school. I had recently been made redundant and wanted to do something to remember Sepp, so I put all my efforts in to organising and training for my 2023 bike challenge, Cycle4Sepp.

I needed a goal and a sense of purpose, and Cycle4Sepp gave me this. It was a celebration of Sepp and an opportunity to raise a good amount of money for Momentum. Even before Sepp passed away, I had decided I was going to do a fundraising event in his memory, and as a keen cyclist it was always destined that this event would involve two wheels. The route brought together the place of Sepp’s birth, Epsom, Surrey, and his spiritual home, the land of his mum, who was born in Finland. I cycled through eight different countries across Europe during my three-week challenge, which was longer than the Tour de France. Sadly, I got an injury right at the end of the challenge which meant I couldn’t complete it, but it made it more fun in a way as friends and family took over and it became a real team effort. Cycling gives me a sense of freedom and makes me happy – I always have a picture of Sepp on my phone when I am out riding, it is like he is with me.

I can’t go up and give Sepp a kiss goodnight anymore, but I have so many wonderful photos and videos to look back on – precious memories that mean the world to me. And while I’d give anything to have him here, there is a small sense of relief in no longer facing the endless hospital visits, appointments, and nurses coming to the house.

The pain still feels fresh, even three years on – we have not accepted it, and there will always be a sadness around us, but we have found some happiness again. My relationship with my wife, Kati, is the best it has ever been and thankfully when one of us is having a hard day it is not at the same time as the other, so we can offer support, talk, and have a cuddle.

Sepp is still alive in our house, and we sleep with some of his cuddly toys. We didn’t change his bedroom for a while, but it is now my office. We kept lots of Sepp’s clothes which we would like to make into a blanket. We have also built a sauna in our garage called ‘Sauna Seppy’ which has lots of precious memorabilia in it. We now have a gravestone for Sepp in a devoted area for infant deaths at Randalls Park in Leatherhead and I often visit with our two dogs.

It can be sad seeing friends who have children the same age as Sepp, I am not resentful, it is just hard. The pain never goes, there will always be a hole in our lives, but I also realise I must carry on. I am grateful for what I have and that we had our amazing boy, Seppy, for almost four years.

Tate is now in his second year at senior school, and I have recently started a new job. Kati wants to live life to the max, taking every opportunity offered. She’s been on girls’ weekends to Prague, Ibiza, Copenhagen and Majorca, this year. Kati is a role model for me and others. She has had a big promotion at work and is bossing life! I couldn’t be prouder.

With each year that passes, remembering Sepp gets harder. Next year he will have been gone for longer than he was alive, and that will be tough to comprehend. I know that the world is a better place if I am there for my family and be a good father and husband – I owe that to Sepp.

Tate can smile again and share happy memories of Sepp, and he will always talk to us if he is upset. He started a new school last year and chose not to tell new friends that he had a brother, and we respect that as his choice.

My wife and I both received counselling organised by Momentum during Sepp’s cancer treatment and after his death. We have also stayed at one of the charity’s respite homes in Shorefield. Both boys loved it down in the New Forest, and we have been there since Sepp’s passing to build new memories and remember Sepp. Vanessa from the Echoes bereavement team comes to see us from time to time and checks in on us by phone too.

I really value the meetups with other bereaved dads organised by Momentum. We’re all at different stages of our grief – some come to seek advice and understanding, others find comfort in supporting those who are earlier on their journey, and for many, it’s simply a relief to be among people who truly understand what they’ve been through.

Kati and I have also done couples therapy with other bereaved parents, organised through Shooting Star. It was interesting to hear different perspectives and stories, and to see how people protect themselves – there is no good or bad way to grieve.

Momentum was vital in helping us cope with the hardest, most stressful situation we have faced in our lives -in fact they have been just as crucial as the treatment Sepp received to fight cancer. Hospital staff, local authorities, or Government do not have the resources to help families like ours with emotional and practical support, so it is essential that organisations like Momentum can continue to be there.

Everyone deals with grief in their own way. For anyone who has recently lost a child, I would say there’s no need to rush anything – take things at your own pace but try to stay open to help when it is offered. Do whatever feels right for you and remember to take care of yourself. There is no right or wrong way to grieve, so don’t be hard on yourself for how you feel. Grief is an ongoing journey, but I try to focus on being grateful for what we had, rather than what we have lost. Sepp’s life was short, but it was good.”

Story taken October 2025.