Welcome…

Hello!! My name is Vicki, I am thirty five years of age. I suffer from a extremely rare form of Congenital Muscular Dystrophy. CMD is a muscle wasting disease which I have had since birth. The specialists told my parents that I would never walk. I was born at Heatherwood hospital in Ascot, but was taken to Hammersmith hospital where I stayed for a long time. I was born by c-section. They broke one of my arm’s and one of my leg’s when delivering me. I was born completely floppy, I couldn’t move at all.

Growing up I had to wear a neck brace, back brace and leg callipers. I proved the doctors wrong and managed to walk.

I also have scoliosis, which is curvature of the spine. I had it very severely. My spine was practically in an ‘S’ shape and was crushing my lungs and heart. At the age of fourteen I had to undergo two big operations where the surgeon Mr Morley attempted to correct the shape of my spine by putting Harrington rods in spine, straightening it as much as he could. I was in hospital for a couple of months recovering.

Up to the age of 22 I was able to walk, drive, I was very independent. I moved into my own flat when I was 18 and I had live in carers who used to help me live independently. I worked full time at a blue chip company.

Unfortunately, a few years after I met Keegan, my boyfriend who I have been with for fifteen years, my health started to deteriorate. I am in chronic pain and have to take a lot of morphine based medications. I can barely walk now as I have become so weak. I even have trouble eating and swallowing where my throat muscles are giving up on me. Keegan is my full time carer so I am in good hands.

Although my health is rapidly going down hill, I do not let it stop me from trying to live my life in a positive way. I am a trailblazer for Muscular Dystrophy UK. I in fact won Trailblazer of the year 2017. I won it for all of the campaigning such as changing sports stadiums in the UK, making them disabled accessible. I have been in the media trying to sort it out. I was presented my award by Michael Attenborough, which was an absolute honour.

Being a trailblazer has given me the platform to help make changes for all disabled people in the UK. I have spoken in Parliament to numerous MP’s at our parliamentary group meetings. These are things I never thought I’d see myself doing. And I absolutely love it.

           

When I am not being a Trailblazer, I love to go shopping (I mean, who doesn’t?) I love make up. I have so much of it, its ridiculous. I struggle these days to apply it as my arms are getting weak. But I cannot leave the house without it, so my arms need to sort themselves out.  I also love clothes, I am not as bad as I used to be with buying clothes. But I have to keep up with the fashion. I also love to bake, and I absolutely love animals. We have two cats, Jose who is ginger and white, and Ziggy who is a grumpy boy who is half bengal. Annnd we have a newest addition King, the chihuahua.

I am going to be sharing my life with you all, blogging about everything and anything. I hope you will enjoy reading them.

 

 

 

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