About Me

My photo
London, United Kingdom
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.

Tuesday 19 July 2011

Shay & The Royal Bodyguard

On the way to GOSH on Tuesday, Daddy and Shay were invited onto the film set of 'The Royal Bodyguard' to meet some of the stars and characters.

Sir David and Tim welcomed Shay onto the set and both of them made him feel totally at ease. Even though everyone was obviously having a very busy day, they took time out to talk to Shay. They were absolutely great with him. As usual Daddy was snapping away with the camera and Shay took everything in his stride. Shay thought Tim looked funny covered in oil and wanted to know why. He questions everything at the moment and can ask up to 20 whys before he is satisfied with the answer! The Bodyguard is being aired Christmas day, which I am sure Shay will enjoy watching.
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)