£2,789raised of £6,000 target by 56 supporters

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

London, United Kingdom

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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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  • Elly Gedye5 months ago
    Elly Gedye

    Elly Gedye

    5 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

6 months ago

Elly Gedye started crowdfunding

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Page last updated on: 3/21/2018 6:38 PM



  • Anonymous


    Mar 21, 2018

    Support from Rachel Kelly (chocolate deli)


  • Hin Wai Tam

    Hin Wai Tam

    Mar 19, 2018

    I saw the FB sharing from Jen Whitten who I met in Tasmania 3 years ago. I read your story and just want to give my support from Hong Kong. Wishing you and your family all the best.


  • Elizabeth Evans

    Elizabeth Evans

    Jan 21, 2018

    You don't know me but your story has touched me. Sending love and prayers to you.


  • Anonymous


    Jan 5, 2018

    Our very best wishes, and we hope that things work out well.


  • Laleh Rafiei

    Laleh Rafiei

    Dec 24, 2017

    You guys are amazing. Keep being strong for Kai!


  • Anonymous


    Dec 22, 2017

    Love from Chocolate Deli customers x


  • Mathilde Gauvain

    Mathilde Gauvain

    Dec 21, 2017

    Merry Christmas, Kai, Sam & Elly! We love you loads ~ Michael & Mathilde xxx


About the fundraiser
Elly Gedye

Elly Gedye

London, United Kingdom

NKH Mum to Kai

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