THE ONLY WEALTH WE HAVE IS OUR RELATIONSHIPS

Oscar’s funeral was exactly 4 years ago on Sunday 13th May – it is also the day we attempt to take 65 children and their families up Mount Snowdon for the charity. I will never understand that Oscar is dead. And I will be forever grateful for the people we have around us supporting us. It is humbling that so many people, and poignantly so many kids, want to be there for us, for Oscar and for other children with brain tumours. In a world where sometimes we lose hope, this weekend restores all my faith in human compassion and empathy and in the saying “The smallest gestures can produce results that will change the world”.

Four years and it still feels like only this morning I was cuddling my boy. I can still physically feel what it feels like to hold him – I know the shape of his strong leg muscles, what his skin feels like on his arms, the touch on my cheek when he would give me one of his rare “butterfly kisses” and it’s a blessing that I can still feel all this. And it is probably incomprehensible for others, but it is true and real for me. And it is all I have left along with memories.

It’s sometimes a strange way that we try to understand life and death; we give the things that happen to us meaning or at least we try to. We come up short, though, when really bad things happen. There is no justification for your child getting a brain tumour and dying. We didn’t need to learn to appreciate our children and our family – they always came first for us, so why? Oscar was such a lovely, kind, funny and strong boy and he certainly did nothing to warrant having to go through so much pain, so why?

Maybe we just don’t have to understand and give it meaning and all we can do is accept. Life is really rather short for most of us and all we can do is try and make it good. I don’t think any of the things we have around us matter much. I know for some it does and I will never understand these people’s way of thinking, but peace be with them; if they are happy and not hurting anyone who am I to judge if the latest big car or tv makes a difference in their life. To me, though, the only real pain I am and will ever feel is missing the people I love and so, the only real joy I will ever feel is from the people I am lucky enough to surround myself with.

So yes, I cuddle my children even more, I memorise the looks on their faces in all sorts of situations and I teach them to be kind, loyal and loving so they, too, will know the joy of great relationships. It’s not just partners that makes us feel happy inside – it’s friends and family, too. I have lots of people around me that when I think of them I can feel that joy in my tummy and laugh out loud about some antics from ages ago still.

And I think of Oscar one day when we walked in to school during his period of treatment and he turned around to me by the car and smiled that biggest smile of his and his whole body did a little jump as he told me he couldn’t wait to go in and see his friends because they made him so happy inside and he asked me if that was odd. Odd Oscar? It is blooming fantastic that you were so lucky to have such great friends and cool enough to know it.

It is also only recently that Oscar’s friends mentioned that they felt we needed somewhere in our home village, preferably the school where he was so happy, whereby he would be forever remembered. Oscar was always someone who was going to inspire people. His tennis coach mentioned at his funeral that Oscar taught him more about life than he could ever teach him about tennis. And he was right; I have never even once known Oscar to give up on anything and whenever I feel myself falter or hesitate a little I think of him and I think; “Because of you I won’t give up!” – what a legacy to have.

We didn’t make it to the top of Mount Snowdon last year due to nature blowing us off the mountain, but in true Oscar style we won’t give up. So 4 years after all your friends and family said their last goodbye to you, we walk with you in our hearts, Oscar Hughes, our beautiful forever 9 year old boy.

 

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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.