Owain James is crowdfunding
Weʼre raising £250,000 to help fund new treatment options for Owain, which are not available on the NHS #FundsForOwain
- Caerphilly
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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
- 1 month ago
Owain James
1 month agoIt'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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- 2 months ago
Owain James
2 months agoThe 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.
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- 3 months ago
Owain James
3 months agoUnfortunately 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.
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Owain James started crowdfunding
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What is crowdfunding?
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.