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£3,685raised of £4,500 target by 82 supporters

Weʼre raising £4,500 to fund life changing treatment for Kai Hulance

London, United Kingdom

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Story

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.

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Updates

3

  • Elly Gedye1 month ago
    Elly Gedye

    Elly Gedye

    1 month 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 months ago
    Elly Gedye

    Elly Gedye

    6 months 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 Gedye1 year ago
    Elly Gedye

    Elly Gedye

    1 year 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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1 year ago

Elly Gedye started crowdfunding

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Page last updated on: 9/20/2018 8:17 PM

Supporters

82

  • Michiel Rotgans

    Michiel Rotgans

    Sep 20, 2018

    £20.00

  • Edmund Pratt

    Edmund Pratt

    Sep 5, 2018

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

    £10.00

  • Karen Rodrigues

    Karen Rodrigues

    Sep 5, 2018

    Thank you for sharing your story of Kai with us at Infinis yesterday, you are amazing parents. Wishing you all the best in raising funds to find a cure.

    £50.00

  • Margot Knight

    Margot Knight

    Jul 22, 2018

    Well done on another brilliant fundraising event today!

    £20.00

  • Sue Choules

    Sue Choules

    May 29, 2018

    The proceeds of a car boot sale done by Sally, Sue and Holly towards Kai's treatment. With love xxx

    £51.00

  • The team at HRW

    The team at HRW

    May 16, 2018

    Thanks for sharing your story for our conference paper on 'information overload'.

    £30.00

  • Karen Glassborow

    Karen Glassborow

    May 7, 2018

    Touching story Elly. I wish you and your family all the best wishes in your search for a cure x

    £20.00

Elly Gedye

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About the fundraiser
Elly Gedye

Elly Gedye

London, United Kingdom

NKH Mum to Kai

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