Please Help Me to Regain my Freedom

Hi, I am Esther, I am 47 years old and live in Derbyshire, England with my husband of 17 years. In 2020, I was diagnosed with a rare inherited condition called Ehlers Danlos Syndrome (EDS). EDS means all the ‘glue’ which holds your body together is faulty and does not do its job correctly. This (for me) results in frequent joint dislocations by just standing or sleeping, chronic pain and chronic fatigue. By 2021 I was prescribed a wheelchair.

Even with my amazing wheelchair I can only leave the house a handful of times a year, as the house is not wheelchair adapted (we have a makeshift ramp a friend made for us, but it is still difficult to get the wheelchair out).

Normally I would be able to apply for a Disabled Facilities Grant (a grant which is given by the council to adapt your home) and I did have an assessment done by the council and whilst they agreed that we require a lot of changes, I don’t qualify for a grant. The fact that I still work full-time from home (and I know that I am very lucky to be able to do so) automatically disqualifies me – if I were to give up work and go on benefits instead, I would qualify, but I want to continue working for as long as I can.

Aside from the symptoms of EDS which I have mostly learned to deal with, it affects me the most that I am unable to leave the house alone. I used to be very independent, but my world has gotten smaller and smaller and is now basically confined to the house for the last three years. I would love to just be able to leave the house and meet a friend for coffee, but that is currently impossible.

Of course, I work, so does my husband and we are not poor – however, 25k (which it would cost to fully adapt the house) or even 6k (which would pay for an electric door) is a large amount of money to save up and would take a few years. Unfortunately, it is the years I do not have.

As luck would have it, I inherited a second genetic mutation from my mother (C9ORF72), which makes it highly likely I will not see my sixties. The years I would spend saving would be years I can never get back, which is why I am asking for your help.

Any donations we would put towards an electric door, so I can leave the house. If a miracle happens and we exceed the target, we would be able to make further changes that may allow me to get into the kitchen and bathroom, but those are far away dreams at present

If you are still reading – thank you for reading my story. Please donate if you can or share this as far and wide as you can – every little bit changes my life and I thank you.