We did it!
Darren Haslam raised £7,045.39 from 206 supporters
or
Start your own crowdfunding page
Closed 01/01/2022
Weʼve raised £7,045 to Jeffrey has recently been diagnosed with Late-Infantile CLN2 disease also known as Battens Disease. we are doing a charity relay bike ride
- Funded on Saturday, 1st January 2022
Don't have time to donate right now?
Story
Jeffrey has recently been diagnosed with Late-Infantile CLN2 disease also known as Battens Disease. This is a very rare genetic disease which is incurable.
He was diagnosed on Thursday 6th May 2021 after battling with what we thought was epilepsy for 18months.
Battens disease is a neurodegenerative disorder which will affect him in many ways. 5-6 children are diagnosed each year in the UK. It is estimated there are 30-50 affected children in the UK.
Children are healthy and develop normally for the first few years of life. Towards the end of the second year developmental progress slow - speech delays. They develop epilepsy which is the first definite sign. They become unsteady on their feet with frequent falls and gradually skills such as walking, playing and speech are lost. Age 4-5 the children usually have myoclonus jerks of their limbs and head nods.
Eventually sight is lost, speech, control of the body, ability to to chew and eat which means a feeding tube will need to be fitted, dementia and then ultimately the loss of life. Children diagnosed have a life expectancy of 6-12 years old.
So we are helping by raising funds by relaying a Teddy Bear named Jeffery around the UK on motorbikes,
www.jeffereysbikejourney.co.uk
Updates
0
Updates appear here
Darren Haslam started crowdfunding
Leave a message of support
Supporters
206
Chloe Fletcher
Oct 12, 2021
£5.00
Anonymous
Oct 12, 2021
£20.00
Kath Metcalfe
Oct 11, 2021
Great to see the good side of humanity supporting others.
£20.00
Louise & Nick
Oct 11, 2021
Well done
£10.00
Suzanne Cahill
Oct 11, 2021
Well done to everyone!
£10.00
Angela Cahill
Oct 11, 2021
Well done to you all.
£10.00
Anonymous
Oct 10, 2021
Keep strong and fighting little man
£10.00
What is crowdfunding?
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.
Great people make things happen
Do you know anyone in need or maybe want to help a local community cause?
Create you own page and donʼt let that cause go unfunded!
About Crowdfunding