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Anne Daybell raised £4,404 from 104 supporters

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Closed 12/04/2019

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£4,404
raised of £5,000 target by 104 supporters

    Weʼve raised £4,404 to save John's life

    Funded on Friday, 12th April 2019

    Don't have time to donate right now?

    Story

    John was diagnosed with Acute Myeloid Leukaemia in November 2018. He has a rare genetic mutation, and needs a targeted drug to help him fight this terrible disease.

    This drug isn’t available on the NHS for John’s rare condition, but he needs it to give him the best possible chance of survival.

    Not a virus

    In October 2018 John felt ill with high temperatures and other symptoms typical of flu. A doctor’s examination told him that he had a virus, and to ‘sit it out’ with paracetamol and sore throat tablets. After two more weeks, he was told that it could be tonsillitis and was given antibiotics, and then on a third visit an appointment was arranged for a blood test. He didn’t make that appointment, as on 4th November he was admitted to A&E in Warrington with a racing heartbeat and other serious symptoms. The next day he was told that he had leukaemia, and was rushed to Whiston hospital in St Helens by ambulance.

    Awful diagnosis

    A further diagnosis at the hospital told us that he had Acute Myeloid Leukaemia and would need three courses of chemotherapy over several months. At that stage he was very poorly, with widespread pneumonia and other infections. After the first course lasting six weeks he was out of danger and allowed home to recuperate before the next course early in January. He was home for Christmas, and he and his fiancée, Anne, were married in Warrington at the end of December. Two more courses of chemotherapy followed, with some good news at the end of the third session. He was in good remission, and would only need to be a day patient for a few months, and then three-monthly checks at an outpatient clinic for a year. What a relief, the end of treatment was in sight!

    Chemotherapy isn’t enough

    However, the week before he was due to be discharged from Whiston his specialist gave us some bad news. It was already known that John had a genetic mutation that had caused the leukaemia, but a more detailed genetic test had flagged a new mutation, of which John’s is a rare form. Up until then, John’s leukaemia was under control but it turns out that the chemotherapy wasn’t enough and now he desperately needs a bone marrow transplant, as soon as possible. In his doctor’s words, this is ‘big treatment’. It’s far more toxic for his organs, and there are many risks along the way which will be life threatening. His care will be transferred to Liverpool Royal Hospital under a team of specialists and treatment will start as soon as a donor has been found.

    Devastated

    John, Anne and their family are in shock, and completely devastated. “It was hard to accept the first time he was diagnosed; we couldn’t believe it was happening,” says Anne. “But now John is facing an even bigger battle. His next treatment will be so difficult for him. This journey is far from straightforward, and far from being over. Without a bone marrow transplant the disease will prove fatal for John.”

    We’re searching for donors

    There are two other barriers to his successful treatment and recovery. He needs a bone marrow donor as soon as possible. He’s on the bone marrow recipient register, but it may take time to find a good match for him. Time he doesn’t have.

    A ray of hope

    In the meantime, there is a drug that may help, which will inhibit the gene that has mutated, but this isn’t available on the NHS for John’s rare form of leukaemia. One dose, lasting two months, costs around £11,000, and he may need several doses. It’s been shown that it could help to put him in a better position before his treatment, as it will curb the development of further mutation of the leukaemia cells, which could give him more time for a suitable donor to be found. This drug has also been shown to improve prognosis for recovery after treatment, but time is running out.

    All donations will go directly to John to help fund this vital treatment.

    Read about Acute Myeloid Leukaemia here: https://bit.ly/2tSj4p6

    To find out more about bone marrow/stem cell transplants follow this link :https://bit.ly/2Tf8B6l

    If you're interested in becoming a donor read more here: www.dkms.org.uk

    Updates

    7

    • Anne Daybell5 years ago
      Anne Daybell

      Anne Daybell

      5 years ago

      UPDATE: John was told yesterday that his 2 genetic mutations are so rare that not enough is known about them to give him a transplant or more chemo. He's not cured and still has a 25% chance of relapsing, but no more treatment for the time being, just close monitoring. The drug we've been raising funds for is no longer needed, so if you'd like a refund we understand. Please get in touch by 15 April. After then the money raised will be split between equipment for the ward and a leukaemia charity. Thanks so much for your donation and for caring.

      Share this update to help us raise more

    • Anne Daybell5 years ago
      Anne Daybell

      Anne Daybell

      5 years ago

      Thanks to everyone for your very kind donations. The amount raised here together with that on Facebook and direct donations means that we've reached our target. Any further donations will be split between equipment for the ward and leukaemia research charities. Every single person who has donated has made a difference, and we thank you from the bottom of our hearts.

      Share this update to help us raise more

    • Anne Daybell5 years ago
      Anne Daybell

      Anne Daybell

      5 years ago
      Update from the Page owner

      80% raised!

      Share this update to help us raise more

    5 years ago

    Anne Daybell started crowdfunding

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    Page last updated on: 4/5/2019 17.52

    Supporters

    104

    • Kieran Fitzgerald

      Kieran Fitzgerald

      Apr 1, 2019

      Good luck John and family, stay strong.

      £10.00

    • Ashleigh Cooper Which? Trusted Traders

      Ashleigh Cooper Which? Trusted Traders

      Mar 29, 2019

      £15.00

    • Carole Anne

      Carole Anne

      Mar 24, 2019

      £10.00

    • Chris Hall

      Chris Hall

      Mar 22, 2019

      £10.00

    • David Blake of Which Mortgage Advisers

      David Blake of Which Mortgage Advisers

      Mar 22, 2019

      Sending my best wishes

      £10.00

    • Anonymous

      Anonymous

      Mar 22, 2019

    • Daniel Pike

      Daniel Pike

      Mar 22, 2019

      £5.00

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    About Crowdfunding
    About the fundraiser
    Anne Daybell

    Anne Daybell

    I'm Anne, John's wife. His family and I love him dearly and we want to help save his life.

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