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Elly Gedye raised £3,885 from 87 supporters


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Closed 30/03/2019

raised of £4,500 target by 87 supporters

    Weʼve raised £3,885 to fund life changing treatment for Kai Hulance

    London, United Kingdom
    Funded on Saturday, 30th March 2019

    Don't have time to donate right now?


    Kai is a year old, and was diagnosed with an incurable genetic metabolic condition- Non Ketotic Hyperglycinemia (NKH) a few weeks after birth. Its been a rough ride of seizures, hospital visits, developmental delays and end of life care.

    We were told originally Kai was unlikely to survive, however we plan to celebrate the shizzle out of Kai's first birthday - one we weren't sure we'd ever get to.

    Recently, we've come across two treatments which have proven to have outstanding results in other children with NKH. We hope that with it, Kai will have a chance at hitting some of those developmental milestones we've missed (like head holding, sitting, and if we're really getting our hopes up, walking and talking).

    The first is Quantum Reflex Integration with Low Level Laser Therapy. It's done at home, and requires the purchase of a laser (which costs up to £5000). This treatment will hopefully help with some of those developmental issues.

    The second is Neurofeedback Therapy - this is done at a local clinic in Battersea. Neurofeedback uses an EEG to assess Kai's brainwaves, and the therapy provides sensory feedback (with music or vibrating cuddly toys), to encourage a more stable brainwave pattern. We hope this help with raising Kai's seizure threshold, hopefully reducing the number of seizures he has. To be effective, it's been suggested we do at least 20 sessions, which will cost up to £1600.

    Neither of these treatments are available on the NHS, and while there are charities who fund treatments and equipment, we've already used our charity allocation on equipment (such as bathing aids, a seizure monitor and additional medical equipment, like syringes and ng tubes).

    We know we're asking a lot, but we can't afford these treatments out of pocket. It's hard to see other children having success with these treatments and not be able to do the same for Kai.



    • Elly Gedye6 years ago
      Elly Gedye

      Elly Gedye

      6 years ago

      <3 - we have the laser and it's doing wonderful things for Kaikai. Additionally, thank to some offline fundraising we've been able to lower our goal on here by £1500. Thank you for everyone for the love and the fundraising. We love and adore you. Thank you for supporting our little family! x

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    • Elly Gedye6 years ago
      Elly Gedye

      Elly Gedye

      6 years ago

      You guys are the best - THANK YOU for your continued support! We've purchased the first part of the QRI laser and use it regularly. We've seen gains (though I feel I should mention we're slowly introducing several different therapies at this point). I'm very very pleased though! Additionally, we've stored away enough money for neurofeedback, but Mikaere is having seizure free days. At this point were holding tight on the neurofeedback - we want to make sure the therapy is right for Kai before we use your generously giving donation money. x

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    • Elly Gedye7 years ago
      Elly Gedye

      Elly Gedye

      7 years ago

      Thanks to the generous donations offline by Josie, Matty + Ted, Kui, and Makki Hameed + Team we've been able to reduce the amount we fundraise here. High Five team!! Thanks for the support! x

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    7 years ago

    Elly Gedye started crowdfunding

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    Page last updated on: 3/5/2019 15.35



    • Steven Roy & Aimee O'Malley

      Steven Roy & Aimee O'Malley

      Mar 5, 2019

      Happy Birthday, Sam!


    • Neil Pennington

      Neil Pennington

      Dec 20, 2018

      Hope you reach your target and beyond.


    • Nadja


      Oct 20, 2018

      Birthday present for Tony - go Team Mikaere!


    • Shane Pickering

      Shane Pickering

      Oct 5, 2018

      You are both an absolute inspiration, fantastic parents and your story touched all of us. Your strength and resolve is tremendous. Your story will help raise awareness and funds to help in the future.


    • Lucy Hadfield

      Lucy Hadfield

      Sep 24, 2018

      Hello,I came to pick up some candles from you recently and found the link for your blog on your Olio profile. You seem like a lovely family and I wish you all the best. Thank you for the candles!


    • Michiel Rotgans

      Michiel Rotgans

      Sep 20, 2018


    • Edmund Pratt

      Edmund Pratt

      Sep 5, 2018

      Ophelia the Austin 7 Chummy was inspired by you all to donate.


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    About the fundraiser
    Elly Gedye

    Elly Gedye

    London, United Kingdom

    NKH Mum to Kai

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