Shay was over the moon to have been gifted with this fab bike. A huge thank you to Fiona for thinking of Shay this way. Shay was jumping up and down with excitment when he saw it and it is constantly by his side when he is in the house. When he is not on it the ignition key goes everywhere with him. The other day he was in the drive just sitting on it watching people walk by and you could see he loved the reaction of the people when they saw it, such a poser!!!
About Me
- Shay
- 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.
Monday, 19 September 2011
A Very Happy Shay
Shay was over the moon to have been gifted with this fab bike. A huge thank you to Fiona for thinking of Shay this way. Shay was jumping up and down with excitment when he saw it and it is constantly by his side when he is in the house. When he is not on it the ignition key goes everywhere with him. The other day he was in the drive just sitting on it watching people walk by and you could see he loved the reaction of the people when they saw it, such a poser!!!
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