|My name is Nic. I am 9 years old. I live near Manchester in England with my Mum, my Stepdad Dave and my Kitten called Kipper. She comes from a little Island called the Isle of Man where the cats have no tails(!) and the local special dish are kippers. My Mum was brought up on the Island and so I get to visit my Grandparents a lot.
I was diagnosed with HME when I was 1 year old, and very soon afterwards I had two bones removed. One from my shoulder, and the other on my hip. Since that time I have had a further 3 bones removed, another on my hip, one in my leg and one at the top of my arm. This one has left me with a nasty scar that itches a lot. Not only that, very soon I will have to have another operation just above the scar to remove another big bone that it growing. I have lots of extra bones all over my body, and some very funny looking ones on my fingers and nails!
HME is not unusual in our family, as my Dad, Uncle, Auntie, Granny, and various cousins have all been affected, but unfortunately, I seem to be the one who has needed the most surgery. We are going to take part in a study to help understand the disease more.
Sometimes my bones ache, especially in my legs, and I don't like the bones and scars, but if people ask, my Mum usually tells people what they are. I don't like to talk about it. I also have one leg a bit longer than the other, but this doesn't stop me from playing football and golf (I'm learning how to play!). I also have swimming lessons, but my favourite pastime is my Playstation! I am also in a youth theatre, and soon we will be putting on a play. I really enjoy this.
I hope that you have enjoyed my story and I would love to hear from other children with HME.
|Here's a photo of Kipper!|
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