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Owain James raised £76,390.88 from 2664 supporters
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Closed 24/07/2024
Iʼve raised £76,390 to help fund new treatment options for Owain, which are not available on the NHS #FundsForOwain
- Caerphilly
- Funded on Wednesday, 24th July 2024
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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
Updates
16
- 3 months ago
Owain James
3 months agoWe are so grateful to the community that has supported us every step of the way. Without the money raised Owain would not have got 21 months, and would not have had such a good quality of life. The funds we received were so critical in giving us that extra time. Nothing will bring Owain back, but it brings comfort to us to donate our remaining funds to another brain tumour survivor. A seperate just giving page will be set up for this and we have asked anyone still raising money or who would to like to donate, to do this in Owain's memory.
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- 3 months ago
Owain James
3 months agoOn Wednesday 26th June, Owain passed away peacefully surrounded by his loved ones at the Heath Hospital in Cardiff. Owain received outstanding care in Turkey but unfortunately the tumour was just too aggressive so we made the decision to come home. As you can imagine we are devastated. We will always keep Owain’s memory alive, Amelia needs to know how wonderful her Daddy was and how hard he fought for her. It is thanks to your support we managed to get more precious time together as a family.
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- 4 months ago
Owain James
4 months 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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Owain James started crowdfunding
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Supporters
2664
Mansel Davies Family
Jul 24, 2024
Good luck Gwen and Billy
£25.00
Mum, Dad & Dave
Jul 23, 2024
Good luck Rhys xxx
£40.00
Elen and Rob
Jul 17, 2024
Good luck with the 3 peaks challenge Rhys and Billy. Thinking of Owain and his family. Elen and Rob xx
£40.00
Anonymous
Jul 15, 2024
£5.00
Harri Fergusson
Jul 5, 2024
Abigails nursery, harri Fergusson
£5.00
Anonymous
Jul 4, 2024
£10.00
Anonymous
Jul 2, 2024
£70.00
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