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Owain James

Owain James is crowdfunding

0%
£75,820
raised of £250,000 target by 2632 supporters

Weʼre raising £250,000 to help fund new treatment options for Owain, which are not available on the NHS #FundsForOwain

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Story

My husband Owain is 34. He’s a football-loving plumber from Caerphilly and together we have a little girl who is 18 months old. In September 2022, out of the blue, Owain was diagnosed with a incurable Grade 4 brain tumour and we were told that if no action was taken, he would have a few months left to live.

At that moment, our lives were turned upside down and we made a promise to each other that we would do anything and everything to have as much time together as we could.

We have gone with everything the NHS has to offer. An incredible team of surgeons at the University Hospital of Wales have removed as much of the tumour as they could without impairing Owain. The course of radiotherapy he is having is using the full amount of radiation one person can have in their lifetime and chemo-wise, he is on the most suitable NHS-approved drug. We are desperate for more time with Owain and there are additional treatments out there that would give us more time, but sadly, they are not available on the NHS.

We have done our research, liaised with our Oncologist and there is hope. Immunotherapy (DC Vax) is a viable option for Owain. It has just completed the phase 3 trial and the clinical evidence shows some really promising results, but it comes at a very high cost. Essentially, a biopsy sample is taken and a vaccine is produced for Owain, specifically to fit his unique tumour. Then his body takes over and fights the cancer itself. The cost of manufacturing the vaccine is £200,000, with additional medical expenses on top.

Optune is also a viable treatment, and available to people in Owain’s situation, in both Germany and the US, but sadly, the NHS does not see it as cost effective. It works in a similar way to radiotherapy, but uses electromagnetic waves to target the tumour. We have an appointment to speak to someone about how much this would cost for Owain, so all we know at the moment is that it’s approximately £20,000 a month.

Brain tumours are the biggest cause of cancer deaths in the under 40’s as there are such limited treatment options available. Not only do we want to have Owain for as long as we possibly can, we also want to make the case for why immunotherapy and Optune should be more readily available in the UK. It may not be deemed as cost effective for the NHS, but to us, he means everything.

Any donation you can make – no matter how small – will get us one step closer to these additional treatments for Owain. Every day is so precious to us, we just really hope we can have more.

Thank you from the bottom of our hearts for taking the time to read this.

Ellie x

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Updates

14

  • Owain James 7 days ago
    Owain James

    Owain James

    7 days ago

    It's been nearly 4 weeks since the surgery and Owain unfortunately started to deteriorate with symptoms of confusion and aphasia, so we are back in hospital. He is much better in himself now but we are presuming this is tumour progression. We've had another round of chemo and await Avastin next week. Further treatment options will be available next week based on the sequencing testing. Our funds are running low and all this treatment is privately funded, if you have anything spare to support our cause we would be eternally grateful.

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  • Owain James 1 month ago
    Owain James

    Owain James

    1 month ago

    The tumour is very aggressive and we have had to fly straight out to Turkey for another surgery. The team in Turkey are fantastic and have removed most of the large tumour, however 2 other spots still remain which are inoperable, plus the little bit in the surgical site. We have had some sequencing done on the tissue and hope to have some further treatments in Turkey. Unfortunately the options on the NHS are very limited and not very good. This is all privately funded and we will continue to fundraise to ensure Owain gets the best care.

    Update from the Page owner

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  • Owain James 1 month ago
    Owain James

    Owain James

    1 month ago

    Unfortunately we have had another set back. The tumour has reoccured on the left side so here we go again. We are currently looking at treatment options and how to tackle this in the best way. We are devastated that our lives have been turned upside down yet again. However are upbeat and still trying to be as positive as we can. Should anyone like to help support or help us in anyway please let us know.

    Update from the Page owner

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2 years ago

Owain James started crowdfunding

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Page last updated on: 6/15/2024 12.57

Supporters

2632

  • Anonymous

    Anonymous

    Jun 15, 2024

    £25.00

  • Anonymous

    Anonymous

    Jun 15, 2024

    £10.00

  • Teilo

    Teilo

    Jun 14, 2024

    Keep on keeping on bud from one father to another (abigails nursary)

  • Marceline Abigail’s Nursery

    Marceline Abigail’s Nursery

    Jun 14, 2024

    £10.00

  • Nikki (Abigail’s)

    Nikki (Abigail’s)

    Jun 13, 2024

    £5.00

  • Raffi from Abigail’s

    Raffi from Abigail’s

    Jun 13, 2024

    £5.00

  • Imogen K (Abigail’s Nursery)

    Imogen K (Abigail’s Nursery)

    Jun 12, 2024

    £5.00

Owain James

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About the fundraiser
Owain James

Owain James

Caerphilly

#FundsForOwain

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