Weʼre raising £6,000 to fund life changing treatment for Kai Hulance
- London, United Kingdom
- Children and youth
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
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.
Share this story
- 5 months ago
Elly Gedye5 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
Elly Gedye started crowdfunding
Leave a message of support
Mar 21, 2018
Support from Rachel Kelly (chocolate deli)
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.
Jan 21, 2018
You don't know me but your story has touched me. Sending love and prayers to you.
Jan 5, 2018
Our very best wishes, and we hope that things work out well.
Dec 24, 2017
You guys are amazing. Keep being strong for Kai!
Dec 22, 2017
Love from Chocolate Deli customers x
Dec 21, 2017
Merry Christmas, Kai, Sam & Elly! We love you loads ~ Michael & Mathilde xxx