Hi, my name is Rachel Winnard I am 35 years old and have been married to Paul for 11years.
Paul is my full time carer because I have an illness called Fybrodysplasia Ossificans Progressiva. This is a very rare condition, only 800 cases known worldwide.
It causes muscle to turn to bone, forming a second skeleton.
I was born with it but wasn't diagnosed until I was 12 years old.
I am a very independent woman who likes to do things myself, but as I've got older I have lost a lot of movement in my left hip then my left arm and always found a way around doing things.
I'm having a flare up in my right leg at the moment and it's a really bad! One the worst flare I've ever had. I now cant sit properly on a chair I cant sit on a normal toilet, I need to carry a seat with me to add height to the toilet and even then someone has to sit me on and pull me off! I cant do it alone.
I cope with all this but with the latest flare up I am unable to manage stairs without Paul physically pulling me up! I am exhausted after the second step.
This isn’t an ideal situation and is also very painful but the thing is I don't want to have to move!
We own our house and have just had the kitchen adapted and a wet room and self cleaning toilet installed.
I have everything I need here. If we move we'd have to have a full house adaptation again and it could take years!! I cant wait years! I am desperate! I am either stuck upstairs, in bed and near the bathroom or downstairs near the kitchen so I can at least make a brew if I want one but then I am unable to get to the bathroom when I need to!
To solve this, I have been looking at getting a lift installed from my front room to my bedroom but the problem with that is that it's going to cost at about £20,000, which we don’t have, so I thought try fundraise and see if we could get the money to help fund it.
If we can't raise the funds then we would have to look at moving and that would just break my heart!!
I am slowly loosing my independence, I don’t want to loose my little home. We have worked so hard for it and we both love it
It is perfect for us , apart from the stairs, so if you could donate even a small amount it would be amazing and it would mean the world to us.
Thank you for reading this.