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John Burley

John Burley is crowdfunding

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£4,125raised of £10,000 target by 111 supporters

Weʼre raising £10,000 to Support and find a cure for Ethan.

What is crowdfunding?

Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

The page owner is responsible for the distribution of funds raised.

Story

Hi friends, family and supporters. This is the story of my son Ethan. He is 9 years old and when he was of 2 years old he was diagonsed with a rare genetic disease called Mucopolysaccharidosis type VI or MPS 6.

MPS diseases are progessive degenerative syndromes which are ultimately terminal. Most children are born seemingly normal but symptoms generally start to show between the ages of 2-4. MPS sufferers are missing a specific enzymes which break down GAGs in the body and as a result they store these GAGs in every cell causing progressive damage and ultimately a shortened lifespan.

At this moment in time there is no cure for MPS.

Ethan is currently under the care of Great Ormond Street Hospital and undergoes weekly treatment of Enzyme Replacement Therapy, which we hope will slow down his disease. Ethan has already had numerous surgeries and his condition has already affected his liver, heart, spine, neck, airway, ears, eyes and much more.

Even with all of these Ethan is a happy little boy and loves life, he shows not only myself but everyone he meets that life is too short and you should always be happy. Ethan loves his best friend Storm the dog and his new baby sister and always wants to help, wherever he can.

How you can help us.

Right now there is a clinical trial taking place in Italy to find a cure for MPS and the medical research team have invited Ethan out there to be screened to potentially take part in this trial next year. If Ethan gets accepted to go to Italy for the full treatment then he will have to remain in Italy for serveral months whilst he is monitored.

The cure is within reach and we would like to raise £10,000 for his stay in Italy and support him throughout the treatment. Any money left over will go towards MPS society who fundraise tirelessly for not only Ethan but other MPS conditions.

Thank you so much for reading

John, Rachael, Ethan, Maddie and Storm xx

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Updates

7

  • John Burley 5 months ago
    John Burley

    John Burley

    5 months ago

    Update from the Page owner

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  • John Burley 5 months ago
    John Burley

    John Burley

    5 months ago

    The Great South Run 10 miles completed in 01:29:04. We thank everyone for their continued support and will hopefully have an update in the next week or so as to whether Ethan has been accepted into the treatment.

    Update from the Page owner

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  • John Burley 5 months ago
    John Burley

    John Burley

    5 months ago

    The shave has taken place, should make me more streamlined for the Great South Run. Many thanks to the boys in blue and my hairdresser for the day.

    Update from the Page owner

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6 months ago

John Burley started crowdfunding

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Page last updated on: 2/3/2019 19.27

Supporters

111

  • Anonymous

    Anonymous

    Feb 3, 2019

  • Philip Lythe

    Philip Lythe

    Dec 27, 2018

    Hope and love to you all my brother. Good luck with everything xx

    £30.00

  • Nicola S

    Nicola S

    Dec 22, 2018

    A very worthy cause. Wishing you all our best wishes, luck and love

    £25.00

  • Tony Coates

    Tony Coates

    Dec 11, 2018

    Best wishes from all at ColdHarbour Tuck Shop

    £150.00

  • Sarah Gourley

    Sarah Gourley

    Dec 4, 2018

    To Ethan&Family. I don't send greetings cards through the year, instead I save the money&donate it.I truly hope this donation will help you and your family in Italy.All the best Little Man. ❤Sarah x

    £480.00

  • TEAM FTC

    TEAM FTC

    Nov 24, 2018

    super fun evening for Ethan with the canicross moon walk xx

    £200.00

  • Anonymous

    Anonymous

    Nov 22, 2018

    Hope you reach the target, all the best for Ethan , from Denise and Max

    £20.00

John Burley

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About the fundraiser
John Burley

John Burley

Ashford, UK

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