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Stuart & Maria Vinen raised £8,946.5 from 321 supporters.

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Closed 16/09/2017

29%
£8,946raised of £30,000 target by 321 supporters

    Weʼve raised £8,946 to Help Henry to get to his Bone Marrow Transplant for SCID and make his 1st Birthday!

    Location
    Norwich, United Kingdom
    Time left
    Funded on Saturday, 16th September 2017

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    Story

    Henry at a mere 8 weeks old was diagnosed with a devastating condition called SCID (Severe combined immunodeficiency). We were totally unaware.

    Our reality is ....

    Not being able to pick him up until you have scrubbed your hands clean for three minutes and put on a special gown.
    Not being able to take him for a walk because he needs to stay in a sterile BUBBLE.
    Not being able to take him anywhere where other people are, especially children.

    Henry was born without an immune system and cannot fight the simplest of infection, anything could potentially kill him. Even the ‘common cold’ passed on by our kiss could be fatal.

    So far he has had numerous infections in his 8 weeks of life. He has a mouth ulcer the size of a 10p in his throat and a severe fungal infection - he receives everything via a feeding tube. Most untreated SCID babies die before 1 years of age. He is under the medical care of Great Ormond Street and is awaiting a bone marrow transplant (BMT) . But in the meantime he is in and out of hospital and back and forwards to Great Ormond Street.

    We want to do everything we can for him, but his brother has also been affected as he is no longer allowed to go to nursery, play with other children , go swimming or to any groups and we need to make sure he is cared for too as he may pick up an infection that could be life threatening to Henry. Henrys brother, Oscar is the likeliest person to be a tissue match for the bone marrow , he's 17 months old. That means both our little boys are going through this ordeal.

    Henry requires 24 hour care. His feeding and medications to keep him stable mean it's a 24 hour job! We need Henry to stay healthy and alive until he can have a BMT.

    We desperately need help towards his continued care, so we can make it to his BMT and his first Birthday. We need to raise awareness for these rare diseases so these babies get to live a normal life outside of the bubble.. please help us do this for Henry!

    Updates

    12

    • Stuart & Maria Vinen5 months ago
      Stuart & Maria Vinen

      Stuart & Maria Vinen

      5 months ago
      Update from the Page owner

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    • Stuart & Maria Vinen5 months ago
      Stuart & Maria Vinen

      Stuart & Maria Vinen

      5 months ago

      Today is 120 days since we started crowdfunding for Henry. The response we received has been nothing short of amazing and the donations on this page and offline have completely stagggered us. We are so humbled by the generosity and kindness of those of you who have given and cannot possibly explain what it means to us. Unfortunately We cannot extend this just giving page past today. But we will set up another one today with the same information on for Henry. I am so sorry it expires one day before the Shipdham Run.Please keep sharing the page

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    • Stuart & Maria Vinen6 months ago
      Stuart & Maria Vinen

      Stuart & Maria Vinen

      6 months ago

      So if everyone could still share far and wide and raise awareness. On an aside Public Health England have agreed to a trial to test for SCID in certain areas. It is at least a step in the right direction and could save other babies. But we still need to raise awareness with GP's. But one battle at a time.

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    • Stuart & Maria Vinen6 months ago
      Stuart & Maria Vinen

      Stuart & Maria Vinen

      6 months ago

      But he is a fighter and he survived the transplant, he suffered a small amount of Graft versus host disease. And after spending every night in a plastic tent having highly toxic drugs pumped in he has got rid of the flu. So for the moment he is stable. He still has a long road ahead and still remains in isolation. And the risk of re-infection is still high and could be set back quite easily. So we are still raising funds to help with his care. Thanks to all your friends and family for their continued support. Shame that Henry has to miss out.

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    9 months ago

    Stuart & Maria Vinen started crowdfunding

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    Supporters

    321

    • Anonymous

      Anonymous

      Sep 17, 2017

      £10.00

    • Pete Seadon

      Pete Seadon

      Sep 16, 2017

      Good luck with your run Kevin.

      £10.00

    • Rachel Wiltshire

      Rachel Wiltshire

      Sep 16, 2017

      Good luck Gibbs!!

      £5.00

    • Sarah Phaup

      Sarah Phaup

      Sep 16, 2017

      Good luck team Blakey, Gibb and Dix. Great work by you all. From the Phaup's

    • Elaina Blakey

      Elaina Blakey

      Sep 16, 2017

      Team Blakey - 10k run, including a donation from John Batty

      £50.00

    • Anonymous

      Anonymous

      Sep 16, 2017

      For E Blakey - 10k run. From S Botly x

      £10.00

    • Rebecca Vincini-Smith

      Rebecca Vincini-Smith

      Sep 16, 2017

      Good Luck Kevin and Elaina! x

      £10.00

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    About Crowdfunding
    About the fundraiser
    Stuart & Maria Vinen

    Stuart & Maria Vinen

    Norwich, United Kingdom

    We are the parents to two beautiful little boys, unfortunately one of them Henry has been diagnosed with a rare immune condition that means he wont live past one years old unless he receives treatment.

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