Ten years ago Katie Fant developed multiple, debilitating, life-changing disabilities - it took her four years to get a diagnosis of Ehlers-Danlos Syndrome, a rare inherited condition that affects connective tissue.
Now Katie, 25, who is studying for a law degree, takes 70 tablets a day, is either bed-bound or wheelchair bound, has a tracheostomy, a feeding tube, a catheter, and suffers from daily seizures and faints.
She said: “My illnesses have taken so much from me, my life plans changed forever.
“Then 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, a progressive and life-shortening illness. He doesn’t know how long he has left, but life expectancy is in the 30s.
“We try not to think about it and just focus on the time we have together; a bit difficult when he lives nearly 100 miles away and he has nowhere to stay if he visits.
“Our time together is precious, we want to make as many memories as we can, whilst we can.”
Katie’s family home is not adapted for her wheelchair and so she is often bed-bound and confined to one room of the house.
Six months ago she started the process of finding somewhere else to live. She initially needs a place of her own, where Sam, 24, can visit but she hopes ultimately that he will be able to move in with her, so they can start their married life together and not have to return to their parents’ homes on their wedding day.
She has been assigned a case worker by Lewes District Council but says she has been told they can’t offer her a place as her needs are too complex.
She adds: “The issue I’m having is discrimination against disabled people in wheelchairs with complex needs in general, but obviously with particular focus on me going through this situation myself at the moment and being ‘too disabled’ to be accommodated by the council, even via the private sector.”
A spokesperson for Lewes District Council, said: “We never refuse to help anyone and while there is a shortage of accommodation for all applicants, we will always do everything we can to help. Regrettably, when applicants for housing have multiple complications, it is more difficult to find specially adapted accommodation that meets their specific requirements. It should be noted that this application was only made on January 21 and council officers are still working on it. The information we have is very different to the information being reported, so we will seek to clarify those details with Ms Fant as soon as possible.”
Katie has set up a petition, to sign visit