As you all know, 10 years ago I developed multiple, debilitating, life-changing disabilities which have only declined in time. It took roughly 4 years for me to get a diagnosis of Ehlers-Danlos Syndrome - my primary condition, but I have many co-morbidities that unfortunately go hand-in-hand with EDS. 

Due to my conditions, I am either bed-bound or wheelchair bound, have 24 hour specialist care funded by the NHS, have a tracheostomy, a feeding tube, a gastric drainage bag, a Suprapubic catheter, suffer from daily seizures and faints, multiple joint dislocations, and intense, constant pain in my joints, stomach and bladder and so much more life-limiting aspects that no one sees. I take in excess of 70 tablets per day, and am on my feed (via my feeding pump) continuously, with hourly water flushes for my fainting. 

My illnesses have taken so much from me in the past 10 years and my life plans changed forever; something that is so hard to come to terms with when you’re told that you’ll never live the life you imagined. Despite this, I took it in my stride and have worked so hard to keep myself as well as I can, despite it not changing my health much! Mainly though, I’ve tried to raise awareness, help other people, set up charity projects to help others (through my adapted teddies, and hospital care kits), which means putting on a brave face every day, as well as doing a Law degree via distance learning - something I am still doing, and have always been determined to finish (if taking exams in ITU isn’t enough dedication, I don’t know what is!). 

I’ve now decided that I’m ready to take the massive step into the big wide world and move out into my own property. My current family home is not adapted for my wheelchair and so unless I am going out (to a medical appointment etc.), I am bed-bound and confined to 1 room of the house. I have no wheelchair access to the other communal rooms in the house, nor washing/toileting facilities or kitchen facilities, nor our garden for some fresh air each day. 

As most of you probably know, a couple of years ago I met Sam; my best friend, my rock, and the love of my life (who I am now engaged to, and who I intend to marry next year). Sam has a condition called Duchenne Muscular Dystrophy which is unfortunately a progressive and life-shortening illness. He doesn’t know how long he has left, nor do I, neither do his parents, or any of the specialist doctors he sees, but the life expectancy is in their 30s. We try not to think about it and just focus more on the time we have together; a bit difficult when he lives nearly 100 miles away and nowhere to stay if he were able to even come to visit. Our time together if precious, and we want to make as many memories as we can, whilst we can..another reason for me needing my own space. 

This is where I need your help. I have been fighting to move out for nearly 6 months now. Yesterday, Lewes & Eastbourne District Council (under whom I live) made correspondence and I was assigned a case worker. In basic terms, she said that she can’t help. She can’t offer me anywhere to live as my needs are too complex for emergency or housing otherwise. I asked her what would happen if I physically had nowhere to go, and in no uncertain terms she told me that wasn’t the council’s problem, but mine to find my own private property.

I don’t get enough money in benefits each month to rent the cheapest places on the outskirts of Brighton, but even more of a problem is that there aren’t even any disabled adapted properties available to rent. I was also told that if I were well and could walk, the council could house me into emergency accommodation within 56 days. 

They are discriminating the disabled by preventing me from moving out of an unsuitable living environment. I would be happy with supported/assisted or independent living, and have been very flexible with where I can live. They are still refusing any help. I have instead been put on the general housing register - where disabilities have no priority - and the wait is 3 - 10 years to be accommodated. 

The next step I have in mind is to approach the local MP for her input. If anyone can think of different approaches or different projects/ways to help me live independently in my own property, I would appreciate it so much. 

It would also be so helpful if you could sign the petition below, to stop disabled people from being discriminated against and being found suitable adapted housing just because they are in a wheelchair and have other medical needs.