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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, 12 December 2009

I'm a Celebrity!!!


What a fantastic day Shay has had at Chrissy's Irish Dancing class feis. Thanks to two dancers who spotted a celebrity just across the road and very quick thinking managed to get everyone out. The poor fella was going shopping and only stopping to fill up with petrol!! Within two minutes he was surrounded by all the dancers plus mums, nans and whoever else you can think of.
Gino from I'm a celebrity was kind enough to come and join everyone at the feis and even stayed to watch some Irish dancing. Gino was more than happy for me to take his picture with our little man and was kind enough to give me permission to publish it on Shay's blog. Absoultely Fantastico!!!!
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