We did it!
Michele Taylor raised £71,467.55 from 2225 supporters
or
Start your own crowdfunding page
Closed 20/06/2016
Weʼve raised £71,467 to Save our Maddi Just a few more days left on my fund raising page for my beautiful niece - Thankyou all so much for starting this journey xx
- Essex
- Funded on Monday, 20th June 2016
Don't have time to donate right now?
Story
This beautiful, brave, local Essex girl, just turned 15, was achieving great goals in her ice skating, dancing and drama.
A few weeks ago her world was shattered with a diagnosis that she has been harbouring a rare genetic disease called "Krabbe (pronounced 'krabbay') Disease" - for which A bone marrow transplant is the only option. At 15, Maddi is the only person within the whole of the UK to be diagnosed with Krabbe disease so whilst The UK 'may' be able to attempt a transplant, theyhave never attempted one on a person of her age for this disease.
The goal is still to get her to America where the top specialist can oversee a bone marrow transplant as its her only hope toward curing her of this condition.
"Krabbe is the lowering and eventual loss of an enzyme which we all need to protect the lining of all the nerves from our brain to every part of our body. As the enzyme diminishes, the lining disappears to zero. In its process, the nerves gradually die off and bit by bit, so will the whole body.
The disease is taking hold and gradually disabling her legs and starting to progress. We do not know its speed nor when and where it will end.
We Want to act now so we can stop it from destroying further .and eradicate it totally.
A bone marrow donor match is currently being searched for within the uk and America.
Maddi has just returned from USA where we paid for rapid extensive tests. Whilst we wait for those results it's excruciatingly difficult knowing this disease is still working and creating irreversible damage. We are in the hands of professionals waiting for a concrete plan. One thing we did learn in USA is that Maddi is even rarer than rare and her deviation of the krabbe gene makes her one of just a few in the whole world.
Whatever the outcome we continue to raise funds for her and the family to support her in any treatment that is best for her and her future quality of life.
Updates
15
- 8 years ago
Michele Taylor
8 years agoA huge HUGE Thankyou to everyone who has donated to this crowdfunding - Maddis family cannot Thankyou all enough 💕👏xx- We continue to raise awareness and funds for Maddi via this new link http://www.treeofhope.org.uk/maddis-story-save-our-maddi/
Share this update to help us raise more
- 8 years ago
Michele Taylor
8 years agoI ve been asked to extend my page for committed events so it will continue another few days 💕👍 there is also a charity " tree of hope - save our Maddi " which you can donate to with gift aid !or contact me michele.Taylor50@yahoo.com Maddi remains well but Krabbe doesn't stop!
Share this update to help us raise more
- 8 years ago
Michele Taylor
8 years agoThank you all for your support and donations - were still waiting on a treatment plan , it's all becoming very tiring foe maddi had she's had enough of hospitals now - we continue to wait for doctors in USA and uk to decide when to give the go ahead so Thankyou everyone 💕👍X
Share this update to help us raise more
- 8 years ago
Michele Taylor
8 years agoOnly a few days left on my fundraising page - I started this a month ago and we've achieved such magnificent support - please don't stop - my niece needs help from the nation to get her treatment plan - please continue when the page expires contact me michele.taylor50@yahoo.com
Share this update to help us raise more
Michele Taylor started crowdfunding
Leave a message of support
Supporters
2225
Anonymous
Jun 20, 2016
£2.00
Anonymous
Jun 20, 2016
£30.00
Anonymous
Jun 20, 2016
£20.00
Anonymous
Jun 20, 2016
£80.00
Anonymous
Jun 20, 2016
£5.00
Anonymous
Jun 19, 2016
£5.00
Anonymous
Jun 19, 2016
£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