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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.

Tuesday, 8 November 2016

Overnight hospital stay.


On Saturday shay was about to go to bed when I noticed that his right side of his face had dropped and he was talking out of the left side of his mouth. A few questions to see if he was feeling and tingling or pain in his body and we had went to hospital.
Unsure as to what caused this, shay was admitted overnight for tests for a mini stroke. Sunday morning he had a MRI, the tests revealed he did not have a bled on the brain.

Now a waiting to see his professor to see what caused this.
Shay was his normal self, laughing at the bed I was given for the night.
 
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