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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.

Friday 20 April 2012

Rock Star Shay! - Day 1

It has been an extremely busy year for all of us. There has been lots of ups as well as downs since January. I am really excited to tell you that Shay was granted a wish through the Starlight Foundation. This was a hectic two day wish starting on Tuesday 27th March. Shay's wish granter Victoria was just as excited as Shay because what he wished for was so unique. Shay was nominated for a wish by his fabulous doctor at GOSH. He was able to choose three wishes and his ultimate wish in Shay's words were "make me a rock star!"

We travelled into London early Tuesday morning where we were booked into the London Plaza hotel. As you can see Shay made himself at home straight away. He was thrilled to be able to see The London Eye, Big Ben and the Houses of Parliament from his bedroom window.

We then hailed a cab to start Shay's wish rolling! Our first port of call was Wungo guitars in Denmark street, where we met Victoria Shay's wish granter from Starlight. Here, Shay was made to feel like a rock star. He was able to play on the guitars and had his very first lesson on an electric guitar. I have to say Mark was fantastic with our little man and Shay enjoyed every minute of them jamming together. Shay was able to play on any guitar in the shop whether it cost £100 or £3000. At the end of his session Shay was given his own electric guitar. I can't put into words how excited Shay was to receive this. We would like to say thank you to Mark and Brian for being so kind and generous to our little man.

After visiting Wunjo Guitars, we had time to get some lunch before making our way to see a real rock band in a studio. We were told we would be jumping in and out of cabs all day. So after lunch Victoria led us on a wild goose chase. We were thinking she was looking for a cab rank but as we rounded the last corner Shay was almost beyond himself and all he could say was "Wow". There waiting for him was a white limousine hummer! This was going to be Shay's ride all day long. He had as much fizzy pop as he could manage and his own disco inside. To give you an idea of the space inside, Shay was able to run up and down without banging his head!









We then made our way to North London where we met an up and coming band called Halfway to New York. These guys were again fab with Shay. Shay even looked the part with his converse shoes and skinny jeans! Shay was given his own private concert for an hour in their rehearsal studio. He even joined in with the shakers to one of their songs. Shay was familiar with this band prior to meeting them and he just adores their music. You could see Shay was totally overwhelmed at seeing a real group play. The lads were brilliant with our little man and at the end of the session they gave him his own electric guitar all signed by the group and a copy of their album which was also signed and is out for release in May.




Thanks once again Sam, Scott, Dan and Martin you have made a little boy very very happy. This was his ultimate highlight of a very special day. A very excited but exhausted Shay was then escorted back to the hummer and the lads stood and waved to him as we were driving away.

Our next stop was back to Soho in London, where Shay was going to see a rock radio station at work. On arriving at Absolute radio, Shay once again was treated like a star. He was given a huge goody bag, a digital radio (which is now in his bedroom tuned to Absolute radio) and his third guitar!! Shay was able to go on a tour at the radio station and even went into one of the studios to see how everything works.









Absolute Radio reserved a table for us at the Hard Rock Cafe in Park Lane, London. They even went the extra mile and arranged for all the children to receive presents, a VIP individual tour of The Vault (14 million pounds of rock memorabilia) and payed our dinner bill. Our waiter at the cafe was amazing and made Shay feel extra special. He even played Shay's favourite tune on the televisions which is The Spin Doctors - Two Princes. The most amazing thing ever, Shay ate a huge hot dog.



After a very exciting first day, we decided to walk back to the hotel. On our way back we had to pass Buckingham Palace and we showed Shay the flag that meant the Queen was in residence. Shay managed to stand outside Buckingham palace for one more show and decided to play the guitar for the Queen. A perfect end to a perfect day.





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