GIVE IT HEART, GIVE IT MIND, GIVE IT SOUL, DON’T STOP!

36BA184C 6BDF 4760 94D7 3761E3DD3DA5I am sitting in peace and quiet for the first time in a very long time. This past weekend was full of wonderful people and lots of noise on Ben Nevis for our fourth Family Challenge weekend. Well, I did steal some quiet solitary moments, but not many. Today I need to just sit still, not just because my legs are aching but also because I need to take time to just think about Oscar.

It hit me this morning that not only is today eight years since Oscar died, it is also the third time I am sitting here on the anniversary of his death without Ian. Last year doesn’t really count, though, because I was lying in bed next to Milo who was slowly dying at the time. Death isn’t instant when it comes to brain tumours – it is slow and painful on so many levels for all involved. And loving my boys and Ian will forever be wonderful and painful. I laugh one minute at the memories and the next I cry – over the same memories. And I sit here and think about all the memories we didn’t get to create. Oscar, no doubt, would have achieved so much already.  He really was the glue that bound he and his brothers together and without him we are all perhaps so very differently bonded together than we would have otherwise been, both good and bad.

I wonder how much a body can take and how much a mind can take and how truly interlinked the two are. Walking up the mountain and at the tough points with Oscar’s “give it all you’ve got cause you’ve really got a lot, give it heart, give it mind, give it soul, don’t stop!” on repeat in my mind, I came a little closer to his determination and ability to conquer anything thrown at him. His mindset was all winning and all determining in how he got through the last year of his life and also in how he died at the end. The last few days before Oscar died I remember as a relentless passing of gruelling seconds and minutes I just wanted to put on pause knowing if time kept passing it would come to a stop much too early for Oscar. 9FC96E92 502D 4F23 B189 EA843F196685

He had so much more to give this world, and his brothers and I try to keep that going for him. We have him with us in everything we do and emotionally that is both wonderful but may also sometimes be a burden, for his brothers at least. The expectations from me are perhaps not always fair. As an example, Lucas was so excited to walk up Ben Nevis – until we actually got high on the mountain and things got tough. At that point when you just need a moment to gather yourself and complain that your legs are hurting, hearing your mum tell you that hurting legs mean you are alive so keep walking may not at all be appropriate. You’d think I would know better.  But we did need to keep walking, and pain does mean at least you are still alive and also, I am not a perfect mother and I was tired, too. Of course Lucas kept walking and found his beautiful smile  again, but no doubt in some years to come there may be some repercussions from my ‘get on with it’ approach to life that creeps in. 

The truth is, it’s the only way I know how to continue. My body and mind are intertwined to a point where I sometimes don’t know when pain starts or stops – it feels rather irrelevant though as it doesn’t change anything. What I cannot control I must leave behind or live with. But what I can control, I guess I feel I must. Like making sure I do what I can for the memories of Oscar, Milo and Ian, making sure we do what we can for other children and families, making sure Seb and Lucas are living a good life, making sure we’re all working hard, staying true to how I feel and what I want – now these are things I can maybe not fully control but certainly things I can give my best try and have a shot at. 

Today I can’t walk for the pain, but tomorrow I will go for a run. No point telling my boys to keep going if I don’t show them that that’s what we do. And I will put on one of Oscar’s favourite songs Ian always played to him in the car on the way to his matches – Thunderstruck. Now that should get me going!

Marie

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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.