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£3,324raised of £6,000 target by 71 supporters

Weʼre raising £6,000 to fund life changing treatment for Kai Hulance

Location
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

2

  • Elly Gedye1 month ago
    Elly Gedye

    Elly Gedye

    1 month 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 Gedye6 months ago
    Elly Gedye

    Elly Gedye

    6 months 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

    Share this update to help us raise more

7 months ago

Elly Gedye started crowdfunding

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Page last updated on: 4/12/2018 9:34 PM

Supporters

71

  • Gareth Hughes

    Gareth Hughes

    Apr 12, 2018

    Sorry I cant make the 'Bar-B-Kai II – The Meat Returns' event, Wishing you all the best

    £10.00

  • Emma Allan

    Emma Allan

    Apr 12, 2018

    I’ve been following your story on Instagram and wish you so much love on this hard journey x

    £5.00

  • Daniela Spulber

    Daniela Spulber

    Apr 9, 2018

    Good luck Kai! X

    £30.00

  • Sueann Chun

    Sueann Chun

    Apr 6, 2018

    Elly, I can't imagine all that your family is going through. Know we are sending love and prayers your way every day. God has a plan in all this...even when it's too hard to see it. God bless!

  • Rachel Sheriff

    Rachel Sheriff

    Apr 5, 2018

    Sending lots of support and love from your Bazaarvoice family.

  • Katy and Jamie Irving

    Katy and Jamie Irving

    Apr 5, 2018

    Proud of you guys! Xx

  • Sara Ingilby

    Sara Ingilby

    Apr 4, 2018

    Just a little something & sending you loads of love from Sweden xxxx

    £30.00

About the fundraiser
Elly Gedye

Elly Gedye

London, United Kingdom

NKH Mum to Kai

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