Natalie Melen is crowdfunding
Iʼm raising £250,000 to fund life prolonging treatment for a much loved father and husband diagnosed with Glioblastoma IDH Wild-Type at just 35 years old.
- Chesterfield, Derbyshire
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Story
******** 06/10/24 - Update ********
Today concludes Gav’s first week of Chemo-Radiation (concurrent chemotherapy and radiotherapy), and it feels appropriate timing to share a little update with you and some information on the treatment we are fundraising for.
As most of you are aware, Gav suffered his first seizure in May, diagnosed with a brain tumour the same week. After two surgical biopsies, on 8th August, it was confirmed as Glioblastoma (GBM) IDH Wild-Type, Who Grade 4. GBM is a deadly brain cancer with a bleak prognosis, but many aren’t aware of the variations there are in this type of cancer. Sadly ‘IDH Wild-Type’ originates as a high Grade 4 cancer making it the most agressive type of brain cancer, the average survival being only 12 months from diagnosis or onset of symptoms.
Gav had a partial resection of his tumour on 20th August where they were able to removed 75%, and began Chemo-Radiation ‘standard of care’ (SOC) this Monday. We have been ‘advised’ throughout this whole process that Gav will receive “gold standard” treatment on the NHS due to his age and general health, while also being told that the treatment they offer has little to no effect on Gav’s type of GBM. Our plea for clinical trials have been consistently denied, and queries on immunotherapy have been shut down relentlessly, even when presented with copious amounts of research. Gav has faced significant clinical mistakes throughout his diagnosis to date including a surgical errors, medication errors, imaging misinterpretation, incorrect storage of his tumour tissue and appealing treatment from a minority of clinical staff while he was an inpatient. This is only scratching the surface of our experience to date and it saddens me to say that this is now the NHS we have to rely on, the most basic healthcare available in Europe.
I have said it before and will continue to reiterate: Gav has grafted his whole adult life, paid his contributions, been an amazing role model to our four young boys, an amazing husband, son, brother, uncle, nephew, grandson, cousin and friend to so many. He is so loved, and we are fighting to keep him as well as possible and with his young children for as long as possible in the hope that they will remember him as much as possible. 🙏🏼
I made my plea and we desperately began fundraising shortly after Gav’s diagnosis to access the immunotherapy treatment he so very deserves, and after only a couple of months, and I am so pleased to tell you that we have almost raised enough for the first two blocks of immunotherapy in Germany, the first of which will be due to commence on 16th December!! 😭🙏🏼🫶🏻🥹🤍🤞🏻💫🙏🏼
I don’t think any of us could have ever anticipated this kind of response, and I can’t put into words just how grateful I am/we are to each and every one of you for getting us to this point. 🙏🏼🙏🏼🙏🏼
The IOZK Clinic in Cologne are specialists in the field of immunotherapy and have offered an extensive treatment plan for Gav starting with 4 x 5 day blocks of immunotherapy concurrent with his maintenance doses of chemotherapy, followed by maintinence vaccinations. The IOZK-Immunotherapy consists of combined treatment modalities including virotherapy, hyperthermia, dentric cell vaccination, and therapy with checkpoint inhibitors. This multi-modal form of therapy mobilises the body’s own immune response, enabling it to take up the fight against the tumor growth itself. There is no treatment of this type available in the UK for brain cancer and the very few vaccines that are available have strict criteria and starting costs exceeding £200,000. They have also offered extensive advice on complementary supplements to take along side this treatment to enhance the effects of treatment and maintain Gav’s health as much as possible.
Each initial block of Immunogenic Cell Death Immunotherapy costs approximately £20,000 to access. This includes adaptions that can be made throughout the treatment to tailor it to Gav’s DNA and any possible mutations that occur throughout treatment.
The approximate cost for each dentric cell vaccination cycle is £26,000 which Gav will need at least 2 of.
Maintenance immunotherapy comes in at approximately £10,000 per session and the complimentary supplements that Gavin is to take cost approximately £1000 each month.
With the view that we have more accurate financial information regarding the treatment plan offered to Gavin, it has been decided that the fundraising goal will increase to £200,000 - £250,000 depending on the amount of chemotherapy sessions offered (we have now been told if his next scan shows it to be working, Gav will be offered more, which means more immunotherapy sessions will also be offered along side them). While this appears to be a huge sum of money, I know that with the continued support and efforts from all of you who have contributed in any way to our fundraising so far, it is ABSOLUTELY achievable.
Thank you so so much for everything! Without you, Gav and I would be counting down the months until we had to say goodbye. We are not naive and have no expectation of a cure, but you have given us the opportunity to acces treatment that can potentially add years to his life so that he can create those lasting memories with our boys! Thank you from the bottom of my heart. I will be forever in your debt!!!! 😭🫶🏻🙏🏼 xxxx
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***11/08/24*** - It is with a truly heavy heart that we begin our desperate plea for your kindness and generosity while we begin our fundraising journey with the purpose of maintaining my husband's quality of life and extending the time he has with our four young children for as long as possible.
On 21st May 2024 Gavin suffered his first seizure, diagnosed a few days later with a brain tumour. Two surgeries later, on 8th August 2024 we received the devastating diagnosis of Glioblastoma, an aggressive Grade 4 brain cancer for which there is no cure and a bleak prognosis. Treatment options are limited.
Having been offered no access to clinical trials until standard treatments have been exhausted and only if Gavin meets their strict criteria, we hope to raise enough money to access private therapeutic treatments not available on the NHS.
Gavin has worked hard his whole life, he has never claimed benefits, and always provided for his family. Unable to work since May he has been failed by the system, refused reasonable adjustments and restricted from accessing any financial government disability support. With this in mind and the cost of private treatments nearing £100,000, it has allowed us to set the bar for our fundraising.
Please keep a look out for planned fundraising events in the near future.
Today I place my pride aside and ask for your help in facilitating a loyal, respectable, hard working family man to access the treatment he deserves to fight this awful disease. if you would like to host a fundraiser or help in any way, please contact myself or the fundraising (facebook) page directly.
From the bottom of my heart: Thank you in advance for any and all support we may receive during the long battle ahead. We will forever be in your debt.
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Updates
1
- 4 days ago
Natalie Melen
4 days agoYesterday concluded block 1 immunotherapy & we are now aboard the Eurostar, homeward bound ready to celebrate Christmas with our young family. We pray it won’t be our last. You have given Gav a fighting chance to see the very things we take for granted: Lucas starting secondary school, Evan reception, Miles on his first school trip or Oscar choosing his options. To continue on this battle we have a lot more to raise, and quickly. Please keep sharing our story far and wide. Thank you so so much!🤍 Merry Christmas from our family to yours!🎄
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Supporters
695
DORLEC LIMITED
Dec 24, 2024
£750.00
Teresa Jones
Dec 23, 2024
Wishing you all a lovely Christmas and hope this donation helps in Gav fighting this cruel disease. This is my chosen charity as an alternative to sending Christmas cards xx
£20.00
Becky
Dec 21, 2024
Sending lots of love to you all ❤️ your all being such a strong team through a very difficult time x
£5.00
9 edges walk
Dec 20, 2024
£10.00
Santa Event 2024
Dec 20, 2024
Huge thanks to the Old House Pub for hosting and for all the wonderful support received - it really is appreciated!
£2,002.11
Anonymous
Dec 20, 2024
£20.00
Lisa B
Dec 20, 2024
Money raised from crochet puddings and robins. Xx
£75.00
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