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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.

Saturday, 6 August 2011

Shay received a very special gift today from one of his friends today. He had no idea who the people in the photograph are but he was over the moon with it. The photo had his name on it and signed by all the people in it. We explained to Shay that the people in the photo were darts players and one was the current world champion along with the other two being previous world champions.
He really wanted to have the picture hung up next to his in the hallway, but we persuaded him to have it on his wall in his bedroom. This was a very kind gift from a good friend of Shay's. It just goes to show that Shay makes such an impact with people and that they are always thinking of him.


A big thank you for making our little man feel extra special again!

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