Weʼve raised £260 to to buy a custom wheelchair to aid my independence in university and to see a connective tissue specialist in london named doctor hakim.
- Sheffield, UK
- Funded on Tuesday, 25th September 2018
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I have a genetic connective tissue disorder called Ehlers Danlos Syndrome Type 3 . I saw a specialist this month who has advised me to seek help from a expert in London named Doctor Hakim. This consultation will cost around £500, including a report that will guide my medical care.
I was managing my condition well until January this year when I developed symptoms of a connected condition called Postural Orthostatic Tachycardia Syndrome, which has made my mobility and independence decline rapidly as it causes the heart to race on sitting and standing and can cause me to fall and become unconscious.
In September I start a foundation course in history at Hillsborough College four days a week, and I can't gain funding for a wheelchair through the NHS. I worry that without one, I won't be able to complete the course to the best of my ability. I believe a wheelchair will give me the independence I need to excel in the career I have wanted since I was small. The wheelchair I need is lightweight to prevent more damage to my joints, and to make it possible for me to construct and deconstruct myself. I need the chair to have these qualities because I suffer from frequent and recurrent dislocations of my joints caused by my genetic disability's collagen mutation, which makes my connective tissue weak, over-stretchy and fragile.
It can be hard to understand why someone would only need a wheelchair, crutches or a walking stick part time . I have sourced an article that explains why I am in need of this specific wheelchair, it is written by someone who has the same conditions as me and understands the complexities .
Part of why I wanted to share this is to help other people in my position, and to raise awareness of these issues with the NHS so they understand that they need to re evaluate there wheelchair services as they are either not providing chairs for people who need them, or providing the wrong sort of chairs, potentially causing further damage to patients who have Ehlers Danlos Syndrome or similar debilitating and life-limiting conditions.
The chair I am looking at purchasing is a lightweight chair that will cost around £1900. I will also be trying to do some fundraising with friends to help out with the price, as I understand that is a lot to ask for, and I also want to contribute myself. I have had to come out of work to concentrate on my health, and would be more than thankful for any donations, ideas or creative contributions. I will be doing a series of paintings with a friend who also has Ehlers Danlos Syndrome, that try to illustrate what it is like to like to live with EDS and POTS. We will auction them off to raise funds towards the wheelchair and consultation. I will add these to the page with the persons name and photos of the art when this happens.
Thank you for your support,
Updates appear here
aimee jones started crowdfunding
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Jul 25, 2018
Jul 19, 2018
KEEP ON TRUCKIN
Jul 16, 2018
Hope we can get this sorted for you Aymi. Beaming the love your way.
Jul 2, 2018
I suffer from multiple chronic illnesses but don't fit the NHS criteria for a wheelchair. I'm also raising money for a wheelchair - my heart goes out to you. I wish I could donate more. All the best!x
Jun 18, 2018
Jun 5, 2018
Good Luck with it.
Jun 5, 2018
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