About Me

My photo
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.

Saturday 21 April 2012

Rock Star Shay! - Day 2

When we got back to the hotel it didn't take long for Shay to settle down and go to sleep. It was such an exhausting day that we were all asleep by 9.30pm!
The next morning, Shay enjoyed the breakfast buffet, even though he hardly ate anything. Our first stop was the London Aquarium, which was only a five minute walk away. Victoria from Starlight pre-booked tickets for us to visit this fantastic attraction. Shay thoroughly enjoyed all the sea life but his favourites of course was the sharks.
Shay's camera skills!

Shay just loves the camera!
Shay's final wish of the day was to visit Hamley's in Regent Street. Shay was totally overwhelmed with so many toys being showcased
  
Shay was amazed this was made out of Lego!

Thanks to this amazing charity, Shay's wish for him was absolutely perfect. They couldn't of done anything more, Victoria made Shay feel like a true rock star. 

Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)