Memories of Oscar

Ten years after his death, we share thoughts and feelings and memories from family, friends and teachers of Oscar - the boy who gave our charity its name and its soul.

Mum, Marie

10 years ago I held my boy close as he drew his last breath on earth. The pain is still as raw as ever and this week I have struggled and found myself unable to concentrate, a constant knot in my stomach and with a feeling of not really being here. I am fortunate to have people around me who have sent me memories of Oscar – great memories and stories of the undeniably strong and fun character that he was. All that he could still be but never will again is something we live with every day. I will leave it to friends and family to tell some of the stories here and only say: Oscar, my beautiful boy, my love, my joy, you will never be forgotten and you will keep inspiring people in this world forever – just as it should be for a boy like you.

Oscar and Marie
Lucas and Oscar

Younger brother, Lucas

I was only 4 when Oscar died and, apart from him always wanting to play with me, my biggest memory that I still love today and that I also started to do myself with Milo was when he would trick me into giving him a hug by putting out his arms wide and saying, “No hugs for Oscar, no hugs for Oscar” and of course I couldn’t help but run into his arms thinking I was the one tricking him.

Hugs with Oscar was the best.

Older brother, Sebastian

Today marks 10 years since I lost Oscar, my younger brother and best friend. This in itself is a big anniversary, but it also marks the fact that I have now lived longer without Oscar in my life than I got to live with him in it. This pain is indescribable. Knowing I have managed to survive without him and carry on enjoying life hurts more than I can explain. 

I had a great 9 years with Oscar by my side, but over these past 10 years, however selfish, I’ve been fixated on all that I’ve missed out on with him. Parents leave us too soon, spouses come too late, but siblings are supposed to go through life together. Yet, I never got to celebrate him turning 18. I will never have a pint with him or go out partying. I will never see him grow up into the great man he was going to be. He won’t be standing next to me at my wedding as my best man. He will never meet my kids. My kids will never meet their uncle. These are the things that hurt me to the core and things that I don’t think people think of when I tell them I’ve lost Oscar, and yet I think about these nearly every single day. 

I miss him everyday and wish my life was different and he was still a part of it. Everything I do in life is to make him proud and I try to live my life to the fullest because he had his taken away from him too soon.

 

Oscar and Seb 1
Ian Oscar and Seb

Dad, Ian (posthumously taken from his speech at Oscar’s funeral)

Oscar’s character and personality carried him through his illness with dignity and strength. He had many other sides, most of which he showed us in his modest, and sometimes shy, approach. Once, when competing in a tennis match with a child who wasn’t as strong or as skilled, he gently hit the ball making sure they had every chance to hit it back and enjoy the game. A mature act of kindness
which made us very proud. He was thrilled to play tennis at the Yorkshire Regional centre and proud to train with the Leeds United coaches – despite obvious allegiances.

Yet, despite his achievements, his simplest happiness was to play with his family and friends, or to kick or hit a ball against a wall, or beat his latest keepy-uppy record. It is the simplest things we’ll miss most about our beautiful son.

To Seb and Lucas: Oscar loved you. He was your best friend, your most competitive team mate and your greatest ally and defender in all of the mischief you got up to. Remember his big smile and hearty laughter and he will be in your hearts forever. Keep close to you Oscar’s thirst for adventure, his courage and determination and you will live a full life.

Mormor and Morfar

Dear Oscar, we think of you every day and often talk about the great times we spend together here in Gilleleje where you spent all your summers. How can we forget about being woken up by a tennis ball banging on the wall to our bedroom from outside at 6am in the morning, because your love for the game overshadowed the need for sleep (including our sleep) and then demanding porridge as soon as you got us up.

Or the game we played every night before bedtime with you and Seb where our bed became the spaceship which took us all over the world with you begging Mormor to tell stories of far away lands dubbing us: Seb the Clever, Oscar the Strong, The Queen Mother and hilariously Morfar was “Tykkemanden” (The Chubby Man). You always wanted to play and we happily abided, little did we know that those games and that time with you would become as precious to us as they have. We thought we would have all our time with you.

Memories of Oscar with his Mormor
Oscar and grandparents2

Grandma

Oscar’s grandad and I adored him. He could get his grandad to do anything and everything. After his grandad died, I started a tradition of taking the grandchildren to town on their birthdays for our own special time together. Knowing how energetic Oscar was, I thought he might start running around. He wasn’t one for holding hands. I told him he had to hold my hand or we would come straight home.

He held my hand as soon as we closed the front door, on the bus and in town. It really made me laugh. He let go when we sat and had a drink, but as soon as we left he held my hand again until lunchtime! He was such a good boy, no trouble. We had to get a taxi home as the bus broke down, so I told him it was a treat as he’d been such a good boy. The smile on his face finished the day off nicely: he thought he was king of the castle.
The last time Oscar came to my house we sat in the garden enjoying the sunshine and a cold J2O as if we didn’t have a care in the world. I often think of that day when I sit there, and wish there had been more.
 

Aunties, uncles and cousins

Some of the strongest character traits the whole family have enjoyed with Oscar were his stubbornness and kindness. We would come to watch him play football and with his team winning he happily passed the ball to all the players drawing them in, but as the game drew towards a close and they seemed on a losing streak he decided to take matters in his own hands and continuously just dribbled the ball passed the opponents one by one jumping over their little feet to score again and again securing the win. Playing any game with Oscar was always a mixture of pure joy and competitiveness.

Another time he wanted to play ball in the street but was told no by Aunt Gitte upon which he sat down on the pavement refusing to move. However, he is not the only stubborn one in the family so she sat down next to him and waited for him to give up – the ‘Who will get up first war’ was rather amusing to passers-by in the village.

Or when he played water fight at Aunt Rikke’s house with his cousin Victor and they ran around soaking everything in their underpants – in fact Oscar preferred to live life in underpants even at pre-school, much to the joy of his teachers there who told stories of being unable to talk him into putting in more clothes.

At Uncle Mads’ house when we think of Oscar we always think of the ‘Bare Belly Club’ with Oscar, Seb, Laura and William. All 4 of them were so cute running around with their bare bellies in our summerhouse doing the gym class with Uncle Mads. But while the other three were just having fun and fooling around a bit, you could just tell that Oscar really listened to Uncle Mads when he told them how to do push-ups and sit-ups or run laps in the garden. It was then that the expression “A day without training is a day without meaning” arrived for the little gang.

Once when we made pizza, Uncle Mads had to have a lot of chilli on it. Oscar thought he should have that, too. He took a bite and denied that it was in any way strong, even though you could see he was struggling. So stubborn!

He adored his little cousin Ella and she was completely in love with him. We’re sure it would be like that today, too. It was so cute when he called her Ella Bella.

We often talk about the fact that he is missing around our dining table. Both when we are all together, but also when cousins ​​are now sitting and having fun and laughing with each other. We imagine him here with his brown eyes and hearty laugh and slightly withdrawn style (just like William) humorously throwing in a very dry comment. Oscar we miss laughing with you.

Oscar and cousins
Frankie and Oscar

Frankie, friend

One of my favorite memories with Oscar was helping Marie make her special coconut cake. We’d crack eggs, mix batter, and add chocolate on top, filling the kitchen with laughter. Every time I went to their house that cake brought us together, creating memories that still make me smile today.

We loved playing football together and I gave him my Dunnington football shirt and wrote on it: “To Oscar, Friends Forever” 

And, we will always be friends forever. 

Tom, Friend

I have many happy memories of Oscar, but more than that Oscar was one of the kindest and most resilient friends I have ever had. I can only hope to be half as kind and resilient as he was. 

Oscar and friends
Oscar tennis

Marius, tennis coach

My earliest recollection of Oscar is as clear as if it happened just yesterday. I was managing an intense Saturday morning tennis match between Seb and Oscar at David Lloyd in York. Oscar’s relentless competitive spirit was unyielding, pushing Seb to his utmost limits.

Seb remained poised and dignified. Despite the defeat at the hands of his younger brother, who was about five-years-old at the time, Seb’s composure was unchanging and impressive. For a seven-year-old, he displayed a maturity beyond his years, hinting at the remarkable young man he was poised to become.

At that moment, I could have never envisioned what lay ahead for this beautiful young family.

Fast forward four years, I found myself standing at the crematorium, struggling to find the right words amidst a whirlwind of emotions as Oscar’s coffin entered draped in sports memorabilia. A life brimming with talent, vitality, and unbridled enthusiasm had been cut short.

Caroline, Headteacher

Oscar touched the hearts of all who knew him. He had a fantastic character, led a very active life and always put his heart and soul into everything he did. He excelled in sport: skilled, ambitious and competitive.

During his illness, he showed tremendous bravery and inspired us with his courage and determination to help others, even whilst enduring intense treatment himself.

Ten years may have passed but Oscar’s legacy lives on in our school and its community. The charity that bears his name nurtures courage and extends care and support to those facing similar challenges. The accolade of being awarded Oscar’s Cup in our annual sports day inspires many children to ‘be their very best’ and also, ‘run as fast as they can’, as Oscar always did!

You are often in my thoughts, Oscar and continue to bring a smile to my face.

Oscar school race
Oscar and children marathon relay

Phil, teacher

Oscar first came on my radar during a school summer fair. It is supposed to be hard scoring past a 6ft5 teacher in child-size goals so I had three penalty spots – the closest being for children in Reception. I still recall vividly telling little 5-year-old Oscar he could take his penalties from the first spot and Marie saying, “Oh, you don’t want him to do that.” Thankfully they persuaded me because he nearly took my head off. I had no chance. He scored all his penalties and wandered off chuckling.

I remember him chuckling at me moaning at the fact he got to wear a Manchester United hat at school during treatment. Not about the headwear obviously as it gave him comfort after he had lost his hair, but about the sickening choice of football team. I think his reply was, “Tough.”

Just before his diagnosis, I was about to pick Oscar as a Y3 for his first school match. He was that good. It wasn’t to be. He never played for the school team. He had always talked with excitement about being in Mr. M’s team. I so wish he could have been. He would definitely have been the captain: he was respected by all who knew him, combined skill, power and drive with a caring and fun nature. I gave Ian a captain’s armband which said, “This should have been yours, Oscar” written on it. How I wish it had been and we had been given more time with him. 

His charity has helped me cope better with the death of my own mum from a brain tumour. It is full of that power and care (and humour) that Oscar was known for. With him at the forefront of our minds, we help others in the time that they are affected by brain tumours. Time that we know is so very, very precious.

Sharon, family friend

Reflecting on Oscar always brings up a lot of emotions. I remember happy times we had before he was first diagnosed – the children playing on the beach in Gilleleje together, fun at a festival, family BBQs, and school sports days (always made more fun because of Ian and Oscar’s competitiveness).

During the difficult times while Oscar was ill, through his surgery, treatment and relapse, the memories that stand out are the happy times – taking him to enjoy his new-found love of fishing, helping him organise the marathon at school, the Halloween night he loved, the Danish Christmas parties, and when won his Child of the Year award.
After Oscar passed away, I had the privilege of helping to establish OSCAR’s charity. It was a significant decision, a way for us all to channel our grief to help other children and families facing the same challenges. His memory continues to guide us, reminds us why we started and the children and families that we’re doing this for.
It’s been ten years, but Oscar’s legacy remains as vibrant as ever. His spirit -and Milo’s and Ian’s too- continue to inspire us. When we set up the charity, we never thought it would be the success that it is today – employing a team of five people, funding game-changing research, providing tailored support for families, and educating the community about the signs and symptoms of paediatric brain tumours.
I think that Oscar would be in awe of the strength his family has shown over the last decade, and maybe a tiny bit embarrassed his pictures still appear in newspapers and on social media. Ultimately though, he’d be so proud to know that he continues to inspire so many people, and that his legacy continues to live on.

Oscar fishing
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Do you need any help or assistance?

Rachel James

Community Fundraising Assistant
Rachel will join our team on September 1st and will be doing a wide range of tasks including promoting the charity in the local community, developing relationships with different people and organisations, and finding new fundraising opportunities. She comes from a caring background having been a teaching assistant and emotional literacy support assistant in York for many years, and previously leading a community care team. She has also done many years of work in the voluntary sector.

Matthew Taylor

Trustee

Matthew Taylor is Director of the York Health Economics Consortium at the University of York. He has been a supporter of OSCAR’s since its inception and, through his twenty years of research into the measurement of health-related quality of life, Matthew is keenly aware of the huge benefits that new treatments can bring to people living with brain tumours.

Matthew is actively involved in national-level healthcare decision making, having had former roles as the Scientific Director of the National Institute for Health and Care Excellence (NICE)’s Economic and Methodological Unit and as a committee member for NICE’s Public Health Advisory Group. He has over fifty peer-reviewed scientific publications, including a chapter in the textbook ‘The Business, Policy and Economics of Neurosurgery’.

Ryan Mathew

Clinical Trustee

Ryan Mathew is an Associate Professor at the University of Leeds and an Honorary Consultant Neurosurgeon at Leeds Teaching Hospitals.

The Hughes Family story had a big impact on Ryan. He first learnt of the charity when he became surgeon to Oscar’s dad, Ian. After a successful surgery, he continued to show great care and concern for the family when Ian became ill again and when Milo, Oscar’s brother, was diagnosed with a brain tumour. Ryan is driven to make life outcomes better for brain tumour patients and their families. His extensive work in both research and surgery is testament to that commitment.

His clinical practice covers the full spectrum of general neurosurgery with a subspecialty in brain tumours. His research focuses on advanced brain tumour models, residual therapy-resistant glioma cell populations, local therapeutic treatments and surgical technologies and devices. He peer-reviews for several journals and grant award committees and has published numerous papers.

More information on Ryan’s work

Lisa Dawson

Trustee

Lisa has been a friend of the Hughes family since 2016 and was honoured to be asked in 2022 to represent OSCAR’s PBTC as Social & Digital Trustee.  Both Lisa and her family have taken part in numerous fundraising events and are dedicated to raising awareness of paediatric brain tumours.  Lisa is a social media content creator, blogger and writer and lives in York with her husband Joe and three children, Ella, Max and Leo.

Alice Beckwith

Trustee

Alice has been involved with OSCAR’s PBTC since 2020. She passionately supports the aims of the charity and believes that if the charity can change one life for the better, then it is a success. Working in the public sector for 18 years, Alice has helped transform Adult and Children’s Social Care Services by ensuring heavy investment in preventative services. This is why the impact OSCAR’s work will have on families is at the forefront of Alice’s motivation to be involved.

As partnerships trustee, Alice is keen to involve businesses, trusts and individuals in the work OSCAR’s does and show them the role they can have in providing the base for the charity to continue to expand its projects to help children with brain tumours.

Sarah Jane Gray

Trustee/Secretary

Sarah has over 20 years of experience in the pharmaceutical and surgical sales sector and is very familiar with the importance of medical advancements for better patient outcomes. She believes research is essential for improving diagnosis, treatment and prognosis for all children with brain tumours and hopes OSCAR’s PBTC can offer much needed funding to help push the boundaries in finding better ways of curing this devastating disease. Sarah’s focus as a treasurer will ensure record-keeping and accounts meet the conditions of the statutory bodies and compliance with regulatory organisations.

Holly Dixon

Trustee

Holly is mother to George, diagnosed with an ATRT brain tumour in 2022, and works as a primary school teacher. She believes that action to support others -however small- can make a massive difference.


She brings real-life experience of what it is like for a parent navigating everyday life, the NHS, the education system, questions from people and a lively young child with different needs.

meet the oscar's team

Sam Marino

Trustee

Marie Hughes

ChAIR OF THE BOARD OF TRUSTEES

Marie founded the charity with her husband Ian, who passed away in 2020. She is the mother of four boys. Two of Marie’s sons have died from different types of brain tumours – Oscar who was 9 and Milo who was 5 years old. She is determined to help find better treatments for brain tumours so other children won’t have to go through what her own sons and her family have.

Marie is Chair of the Board of Trustees, working closely withe the team on strategy and vision. Marie lives in Copenhagen with her two other sons, Sebastian and Lucas, and works as a Risk Manager on the Danish railway.