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.

Starlight Photo's

Shay took a photo of himself.

Starting to become comical!

Look at me, it's all mine!! Shay in the hummer.


A tired Shay but thrilled with his guitar from Wungo Guitars.

Halfway to New York!


The amazing view from the hotel.

Just chilling.

Enjoying the blaring music.

Family photo with the lads.

Absolute Radio!

Hard Rock Cafe, The Vault.

The Vault.

My special little rock star and me.

So many things to do, he didn't know what to touch first!

Those three guitars are worth thousands of pounds!

The London Aquarium.

Elvis's coat in the background.

The Penguin!

Shay always manages to smile.

Picture by Shay.

It looks like an animation, it's real.
Thank you Victoria, a very super special lady.

1 comment:

  1. VictoriaMon Apr 23, 09:12:00 am 2012

    Thank you Sharon! I'm so glad you all had a great time and I loved spending time with you all xx

    ReplyDelete

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