About Me

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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.

Sunday, 26 January 2014

Shay meets Harry (From McFly)

Shay had a fantastic day yesterday, he met another rock star, Harry from 'McFly'

Harry was impressed with shays dress sense and told him that he will be wearing the jeans and boots in his next video, as shay looked cooler than he did. This impressed shay, who's smile started to get bigger and bigger.

Shay asked me several times if I had said thank you to Harry for meeting him. I did, but shay never fails to amaze me, he always thinks of other people.

My little rock star.

Regards

Alan


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2 comments:

  1. Manicmum89Thu May 01, 11:02:00 pm 2014

    Hi. Hows shay doing?
    Hope you're all well x

    ReplyDelete
  2. ShayThu Jul 30, 10:58:00 pm 2015

    he is doing okay at moment within himself, but i will update this again in next few days and had a call from his professor today with more news

    ReplyDelete

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