Absolute Radio!

Shay was very excited when he received a big brown envelope from Absolute radio station today. He was even more excited when he played the enclosed disc and listened to himself introducing a song by The Spin Doctors - Two Princes, his ultimate favourite song! They included two signed photographs personalised to Shay from Ian Wright and Frank Skinner (just to add to his ever growing collection). The people who work at this station are amazing and very thoughtful, they have also invited our little man to their children's Christmas party at the end of the year.

Happy 5th Birthday Shay!

The day after Shay's starlight wish was his 5th birthday. What a busy week it has been so far for the little guy. He woke up so excited and kept saying 'I'm 5 now'.
The last three years since Shay was diagnosed has been a nightmare and for us the most important thing was ensuring Shay received the right medical support to the age of 5. This was our ultimate goal. So many children with Pearson's Syndrome don't survive to this age, I knew Shay would. A very bold statement to make I know but somewhere deep down I knew my little boy would be celebrating his 5th birthday. Shay had a fabulous birthday and when he came home from school, there was a huge surprise package waiting for him. A huge surprise for us all! It was addressed to rock star Shay and had the Starlight Emblem all over it. We knew nothing of this and knew that Shay's wish bearer Victoria was responsible. Thank you Victoria!

The Rockband bundle for the WII console.

A couple of days later Shay had a big birthday party to celebrate with all his family and friends from school. He wasn't sure who to invite as he is not very good at remembering names. So we invited the whole of reception!

A football themed party!



Even his favourite teacher from nursery helped Shay celebrate.

Food time!



Parents helping out.



All the children were fantastic.

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. 



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.

Update coming soon!

An update is coming very soon! We have been busy with Shay's 5th birthday and also a wish was granted for Shay from the Starlight Foundation.

HAPPY NEW YEAR!!

Wishing you all a very Happy New Year and wish everyone of you the best for 2012!! It's been a busy time over the festive holidays so will update Shay's blog very soon.

Feeding issues!

Again, it's been a while. Life just passes you by and before you know it yet another couple of months has passed by. Shay carries on with life regardless of how he feels. In between never ending hospital appointments he needs to attend, Shay just wants to have fun like a normal 4 year old. He is now in full time school which most days he finds absolutely exhausting. Some mornings we let him go to school later and all he wants to do these mornings is to just lay down and watch movies.
The last couple of months we can see Shay's health deteriorating. Anyone who knows him only has to look at his lovely green eyes, he just looks so tired all of the time. When I look at him it is hard to stop your emotions spilling out. Automatic pilot is now a way of life for us, its the only way we find strength to cope with whats coming our way and being incapable of having no control over any of it.
Where do I begin with my little man? he is such a complex medical case its totally mind boggling at times. Between Alan and myself, somehow we get there at understanding how complex Shay is.
Shay has hit rock bottom with his eating. For two years now I have battled with Shay at times just to get him to eat. We have tried all techniques to get him to eat. There is nothing I have not tried. Someone said to me the other day "do you praise him?" We have learned to let comments like these go and just ignore them.
It now looks like Shay will have a feeding tube inserted directly into his stomach. We have an appointment in a couple of weeks to discuss this. Shay at the moment enjoys peperami's, sour cream pringles, vanilla ice-cream and not much else! I still manage to feed him his one weetabix in the mornings but he is even trying to stop that. I have took the pressure of his eating completely and if he doesn't want something then I will always find him something he will eat. His school has been fantastic with supporting him with his eating. He doesn't finish lunch at the supposed time and will only eat his two small peperami's. He will then have his tiny squares of sandwich late afternoon. We are pretty adamant that he needs this tube to survive and to take the pressure of him eating. All of his eating is supervised, if it was up to Shay he wouldn't eat at all (maybe just those dreaded peperami's). He will still be able to eat once he has the tube inserted but when he wants to. Once the tube is fitted we will hopefully see a big improvement in his general health and well being.