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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.

Friday 25 March 2011

A special day out

I really need to be more organised and try at least manage to keep my little mans blog up to date! But life has been a little more than hectic to say the least. Shay had a fantastic 4th birthday and is now the very proud owner of a motorbike just like his Daddy. Of course he is exempt from any speeding or road traffic offences now :0)
A couple of days before his birthday Shay had a brillant day out at Camden town hall with Daddy. On the way he stopped to see his 'best friend' (as Shay calls him) Paddy Hughes. They enjoyed a late celebration in the pub for St Patricks day as you can see by the hats in the picture. After visiting, Shay and Dad both made their way to the town hall so Shay could watch his Daddy receiving a commendation. Shay was allowed to be next to Dad during the ceremony and must say gave Dad a tough time. Shay knows when to be quiet but his whispering is extremely loud! He was so proud to go up with Dad to receive his commendation by the borough commander and John Snow the channel 4 news reader. Shay had a fabulous day out and on the way back insisted on stopping at the pub again to see his 'best friend' Paddy.

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