Shay
My blogs
Blogs I follow
| Gender | Male |
|---|---|
| Occupation | Full time school |
| Location | London, United Kingdom |
| Introduction | Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son. |
| Interests | I still love bikes especially police bikes and things that go really fast, Books, I still have my blue Ted's (no other will do), Construction, anything to do with sirens(dad's influence) and Motorbikes. I love top gear now and have grown up so I don't watch cbeebies anymore; Mum says I spend too much time on my playstation vita!!! my favourite new game is need for speed. I love it when I crash into cops and then they chase me. |
| Favorite movies | iRobot, bad boys, independence day. I like big boy films now!! |
| Favorite music | Want to see me dance play 'Bad Boys' theme tune. I still love to dance and want dance lessons. Mum can't find anyone to teach me hip hop and breakdancing for just half an hour a week :0( |
| Favorite books | I now like books to be read to me. I cant seem to concentrate very much so I prefer short stories or stories I can watch on the computer. |
The hair from your last haircut ... what would it say about your new style?
Just totally cool!!! but Mum doesn't always let me use hair gel.