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Rebecca Griffiths raised £20,501 from 481 supporters


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Closed 05/07/2018

raised of £40,000 target by 481 supporters

    Weʼve raised £20,501 to help fund life changing & life saving treatment for Rebecca who has been struggling for years without success to help with her rare diseases

    Funded on Thursday, 5th July 2018

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    Rebecca needs to raise at least £40,000 for life changing, life extending and potentially, life saving treatment in Germany, including complex diagnostics and gastro surgery to help with her 'untreatable' yet hellish medical condition that has stemmed from her Cyclical Vomiting Syndrome, severe Gastroparesis, aggresive Type 1 Diabetes, autonomic neuropathy, rare immunodeficiency (CVID) as well as progressive nerve damage. She is now registered blind (severely sight impaired).

    For over 4 years, Rebecca has been suffering from severe bouts of debilitating nausea with vomiting attacks that last up to 5 days always, requiring admission to hospital for emergency treatment: treatment which only ever patches her up, she goes home without any answers. During attacks, she vomits dozens of times a day which seriously damages her already ulcerated oesophagus, tears worsen, she vomits blood and for the majority of time in between bouts she cannot eat or drink - she has lost over 23kg since the end of April.

    She has exhausted all options available in London & UK, including consultations & inpatient stays under leading gastro consultants & professors together with a year-long inpatient stay at one of the two UK specialist gastro intestinal failure units. At the end of the year her consultant admitted defeat. She has been through A&E at Royal Berks Reading over a hundred times since April and counting, where she is sedated or treated for other symtoms which could be temporary paralysis of limbs, respiratory failure, kidney failure (injury), collapse, diabetic ketoacidosis or whatever other symptoms arise.

    Good days or part days are few & far between, planning is a waste of time although she tries to see friends when she can, often pushing the limits & going straight into A&E from wherever she is - this was the 3rd consecutive Christmas & Boxing Day spent nearly entirely in hospital.

    She has no quality of life aside from managing the very occasional gathering & hospital appointment. Challenging and demoralising, Rebecca yearns for just a bit of her old life back. Friends & family suggested she tried the USA but a very recent referral to a top specialist in Leipzig, Germany has now given her hope. The recommendation has come from 2 previous patients, also untreatable in the UK. The first made a near complete recovery, the second has just returned already with 70% improvement. The professor has stated that he expects to be able to help Rebecca - she has been offered an appointment with tests on 23rd January. The sooner she books flights the less they'll be. Treatment in Germany is cheaper than the USA. Rebecca will given more information about precise costs of surgery, treatment & care once she's undergone assessment (minimum £30k)..

    Please can you help in any way you can - this treatment in Germany is likely to help get some or a lot of her old life back. Once she's stable - and improved - she'll be considered for the Pancreas Transplant list in Oxford (NHS) - which she needs to tackle her complex diabetes. When Rebecca is at home it's like walking a tightrope - severe dehydration daily means constant fluids pumping through day & night, constant medication, immunoglobalin infusions, contant monitoring, contant caring, constant nausea & constant effort to avoid her going back in. She so needs her independence again and some joie de vivre!

    Thank you all xx



    • Rebecca Griffiths2 years ago
      Rebecca Griffiths

      Rebecca Griffiths

      2 years ago

      Hi everyone! I’m so sorry that I haven’t updated you all for a while. I’ve been really struggling with nasty nausea and vomiting after the pain relief post op but on Monday I asked the surgeons to take me off all pain meds and I’m now doing much better. I am completely overwhelmed by all of the support and kindness that I have been shown from both dear family and friends, and people I have never met. You have all helped me get this far and fingers crossed it won’t be too long before I’m back at home! Thank you ❤️

      Update from the Page owner

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    • Rebecca Griffiths2 years ago
      Rebecca Griffiths

      Rebecca Griffiths

      2 years ago

      On the plane! Just about to take off on our way to Dusseldorf and my operation on Wednesday. I will try to keep you all posted. Thank you everyone who has helped me get this far! ❤️

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    • Rebecca Griffiths2 years ago
      Rebecca Griffiths

      Rebecca Griffiths

      2 years ago

      A message from Germany ‘trip’ postponed by 3 weeks. Recv’d email from Prof Sandmann apologising. Due to an unavoidable situation relating to another international patient’s condition, Rebecca’s surgery will now take place on the 25th April. He has asked her to arrive on Sun 22nd. Frustrating, but he has explained it is also a safety precaution because he needs to be available/on hand 100% of the time to oversee all eventualities pre & post R’s surgery on 25th. Expected stay at Mettmann hospital 3weeks duration.

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    3 years ago

    Rebecca Griffiths started crowdfunding

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    Page last updated on: 5/13/2018 16.39



    • The Thursday Thinners

      The Thursday Thinners

      May 13, 2018

      Dear Rebecca, we hope this small donation will help you and hope that you are feeling some benefit from your treatment. With best wishes, Louise, Phil, Ali, Gary, Pam and Steve.


    • Jonathan Eyers

      Jonathan Eyers

      May 4, 2018

      Hi Rebecca, I just read your story in the Henley Standard. I so feel for you and wish you so much luck with the Op and recovery. Chin up and keep fighting!Love Jonathan and family.X


    • Amy Berridge

      Amy Berridge

      May 2, 2018

      Wishing you the best of luck with everything! X


    • RPS


      May 1, 2018


    • Andrea Lawless

      Andrea Lawless

      Apr 26, 2018

      God bless you Rebecca. I hope this surgery gives you your life back. You are so brave and a fighter. Just sorry I can’t do more xx


    • Anonymous


      Apr 25, 2018

      Hoping the surgery goes well and thinking of you x


    • Anonymous


      Apr 24, 2018

      Good Luck in Germany


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    Rebecca Griffiths

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