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£2,061raised of £2,000 target by 44 supporters

Weʼre raising £2,000 to help raise funds for specialist developmental treatment for our daughter JoJo.

North Devon District, UK

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Story

As most of our family and friends know, our youngest daughter, JoJo, has a rare genetic condition called Prader Willi Syndrome (PWS).

PWS is a condition which happens entirely by chance - a tiny missing piece of genetic information on chromosome 15. Despite it being tiny, this missing DNA effects almost every aspect of JoJo's function.

However, we refuse to let it beat us. We don't see any reason why JoJo won't be able to do everything and anything that her peers can - it might take her a little longer to get there, but we want to give her every chance going to fulfil her potential and beyond.

Everyone who has met JoJo knows how funny, smiley, sociable and loving she is. They also know how fast she can now bum-shuffle about the place. As lovely as this is (especially seeing as she could hardly move an inch a year ago), we'd love her to save our creaky backs & get up and walking so she can leave an even bigger trail of untidiness in her wake than she already does.

We recently self-funded a 3 week intensive physio block in The Footsteps Centre, an amazing physiotherapy centre in Oxfordshire, specially set up for children with neurological conditions. JoJo came on in leaps & bounds (or shuffles & wobbly footsteps) and we know another block would be hugely beneficial to getting her on the road to walking.

Alongside that, we will be enrolling her in a special programme of daily repetitive mental exercises, tailored to her, from a place called The Snowdrop Centre - recommended to us by a family we met whilst at Footsteps. We'd love to explain here exactly what this is, but it's too complicated & in-depth for us to even begin! The website is www.snowdrop.cc for anyone who wants to challenge their brain - it's mind bogglingly amazing.

So to end this essay - over the next 5-6 weeks we are going to be organising some fundraising events to help us fund the physio & brain physio that we know will make such a big difference to our lives.

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Updates

3

  • Emily Mackenzie-Shapland4 months ago
    Emily Mackenzie-Shapland

    Emily Mackenzie-Shapland

    4 months ago

    The grand totally from the Blue Groove coffee morning is in - £521!!! 🎉🎉🍰🍰 That’s a lot of cake and tea! And I think more than anything, a lot of amazing support & generosity from an even more amazing community. Thank you so much to everyone who came, ate, drank & spent the morning with us - your kindness is unmatched xx

    Share this update to help us raise more

  • Emily Mackenzie-Shapland4 months ago
    Emily Mackenzie-Shapland

    Emily Mackenzie-Shapland

    4 months ago
    Update from the Page owner

    Share this update to help us raise more

  • Emily Mackenzie-Shapland4 months ago
    Emily Mackenzie-Shapland

    Emily Mackenzie-Shapland

    4 months ago
    Update from the Page owner

    Share this update to help us raise more

4 months ago

Emily Mackenzie-Shapland started crowdfunding

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Page last updated on: 6/9/2018 10:24 AM

Supporters

44

  • Andrea Stebbings

    Andrea Stebbings

    Jun 9, 2018

    Sorry I couldn’t make fundraiser today good luck with everything x

    £10.00

  • zoe appleton

    zoe appleton

    May 31, 2018

    Good luck Emily and Josh - love zoe, rich and isaac xxx

    £20.00

  • Vik

    Vik

    May 31, 2018

    £30.00

  • Sam Dodge

    Sam Dodge

    May 3, 2018

    Go Jojo 😘

    £20.00

  • AnneMarie Collins

    AnneMarie Collins

    May 3, 2018

    Good luck with JoJo's continuing progress, love Anne Marie and Jason xx

    £20.00

  • Anonymous

    Anonymous

    May 2, 2018

    Wishing you every good fortune in Jo Jo’s progress

    £20.00

  • Iona Tilley

    Iona Tilley

    Apr 30, 2018

    £30.00

Emily Mackenzie-Shapland

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About the fundraiser
Emily Mackenzie-Shapland

Emily Mackenzie-Shapland

North Devon District, UK

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