I’m Zavier Shanks, though everyone seems to call me “Mr Sausage” for some reason.
I was born in Worcester on 1st October 2010. My mummy is Suzi and my daddy is Tom. I have 2 big sisters and a big brother. He’s my big mate and he looks after me just like big brothers do.
I get lots and lots of cuddles and kisses from everyone (between you and me I think I probably get too many – everyone makes such a fuss and they could do with just giving me a break every now and then)!
I enjoy listening to the general chaos around the house and I like watching football matches too. I spend the rest of my time trying to avoid hospitals and I try to squeeze as much fun as I can out of each day. That said, I enjoy relaxing activities like sleeping, feeding and bathing too. Because I have something called an NG tube I can actually have my dinner and sleep at the same time. I bet you wish you could do that don’t you?
Mine is a fairly uncomplicated life, and I am no poorer because of that let me assure you. I have something (and brace yourself, as this is a bit of a mouthful) called a severe congenital sensory and motor peripheral neuropathy. It causes me no real pain though, and like I say, I’m pretty relaxed and matter of fact about things generally.
12 friends of mine are planning to climb Britain’s 3 highest peaks in 3 consecutive days in aid of the Orchard Nurses. They are a small team of nurses who ensure that I am able to be looked after at home rather than in hospital or in a hospice. They are an invaluable support to me and my family, and can be here within minutes of us contacting them every day.
They all arrive with a smile on their faces and nothing is too much trouble, from replacing feeding tubes, ordering medicines, equipment, contacting the GP, organizing appointments with other professionals and generally ensuring that we as a family are looked after in every way possible. Rosie, our Family Support Worker has built a wonderful relationship with Xara, Jasper and Scarlett and is helping them to deal with the enormity of the situation that we find ourselves in and helps them deal with their feelings day to day and looking to the future. Her role covers the whole county and other families but she always makes time to visit us and to ensure that we are all ok, even the Henry the dog!
My friends want to do this in order to raise money for these wonderful people ensuring that I continue to get the best care possible at home for my lifetime.
I would be so grateful if you would consider sponsoring them in their endeavours and raising money for this great cause which is so very personal to us.
Hope to see you soon.
Lots of love,
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