15%
£935raised of £6,000 target by 21 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

1

  • Elly Gedye5 days ago
    Elly Gedye

    Elly Gedye

    5 days 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

21 days ago

Elly Gedye started crowdfunding

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Supporters

21

  • Anonymous

    Anonymous

    Oct 19, 2017

    £100.00

  • Linda Groarke

    Linda Groarke

    Oct 19, 2017

    Happy birthday gorgeous Kai. Look forward to seeing you reach your milestones as I know you will. Lots of Love.

    £30.00

  • Liz, Rob and Quin

    Liz, Rob and Quin

    Oct 19, 2017

    Happy belated birthday for Mel and Kai this month! I love you guys (and Sam) so much and hopr you get these amazing treatments for your boy. Arohanui xxxxx

    £50.00

  • Kirsty Palin

    Kirsty Palin

    Oct 19, 2017

    Happy bday beautiful Kai x

    £20.00

  • Anna Hildyard

    Anna Hildyard

    Oct 19, 2017

    Happy 1st birthday to Kai! Hopefully the treatments will make a massive difference xx

    £50.00

  • Hamish, Lu and Liam

    Hamish, Lu and Liam

    Oct 18, 2017

    Happy Birthday little man! We love you and are so proud of the little fighter you are...keep on being awesome xxx

    £50.00

  • Kimberley Bush

    Kimberley Bush

    Oct 18, 2017

    Happy birthday super baby

    £10.00

Elly Gedye

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About the fundraiser
Elly Gedye

Elly Gedye

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London, United Kingdom

NKH Mum to Kai

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