Jamie

Hello my name is Jamie. I love watching The Jungle Book, Toy Story and Shrek. My favourite animals are chickens and I like watching them run about at the local farm, they make me laugh a lot.  The toy I like to play with the most is my Buzz Lightyear, he makes lots of great sounds and has flashing lights!  Everyday I try to help my mummy and daddy and I especially like to use the Hoover, as it makes lots and lots of noise.  I have many naughty bones in my body which sometimes hurt a lot and can make me very sad however most of the time I have a big cheeky smile on my face.

Jamie was born with malformed toes but he was also born with a rare type of heart condition known as TAPVD.  For the first two years of his life Jamie was very poorly having undergone two heart surgeries and one brain surgery, due to hydrocephalus.  He came out of all this fighting and is the spirited little boy we see today, however just when we thought things were getting good with Jamie's health he started to developed lumps around his neck and shoulder area. He had been in pain and most of the doctors and consultants could not work out what was causing the inflammation. To cut a long story short after countless appointments at 3 different hospitals with various specialists we got the diagnosis 30th Aug 2012.

Jamie was diagnosed with FOP (Fibrodysplasia Ossificans Progressiva) at the age of 3.

Since this time he has lost movement in his shoulders, neck and spine, making it extremely difficult for him to negotiate the everyday things, such as eating, walking up a stairs, riding a bike or perhaps sitting in a chair.

Through all of these traumas Jamie has a big personality to match his smile and is always seeking to enjoy some of the more noisy aspects of life, like steam trains, airplanes and fast cars.

Jamie's Fundraising Page

Date of Birth: 
Monday, 30 March, 2009
Diagnosed: 
August, 2012

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