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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.

Thursday, 16 June 2011

Shay's special day.

Shay has just had the most fantastic day as a new fledgling police officer! He has been asking Daddy for quite a while to "go catch bad boys". A huge thanks to the Metropolitan Police Service for making this dream come true.
Shay was aware that he was going with Daddy and his friend Simon to work for the day. Shay was excited that morning and he even helped pick what to wear. What he was not expecting was to be issued with his very own uniform! The uniform services dressed Shay in police trousers, a police shirt, belt and utility belt and even his very own beat duty helmet (all customed made to fit Shay especially). Shay looked in the mirror and whispered to daddy "get bad boys dad". Shay was thrilled with his helmet it really made the day that extra bit special. Now all he needed was a set of wheels, so a short walk to the driving school and he was in his element. He enjoyed being driven around with lights and sirens on in the police armored truck. That was not fast enough for him, it was not long before he was in the marked BMW estate chasing a criminal around the streets of Hendon. The pursuit lasted about 5 minutes before the criminal stopped and tried to run off. Constable Shay Murray was overjoyed when he managed to catch the bad person and even arrested him.
Next, it was the skid pan. After the car spinning around the first few times Shay said to Dad "just like Mummy, Dad". Shay took all the spins, turns and stops in his stride.
Now, Shay loves being around dogs and it was a real treat for him to see the dog section at work. Shay was introduced to several dog handlers and a couple of the police dogs. Shay was shown how the dogs track naughty people and then shown how they catch them when they run away.

After a display the dog sergeant showed Shay his dog and let Shay groom him (which he thoroughly enjoyed). Whilst doing this Shay noticed a handbag on a chair close to him. A few minutes later Shay started to blow his police whistle as he had seen a criminal take the bag and run off. Shay was blowing his whistle really hard and started shouting along with the other officers present. The best part was for Shay to witness the police dog chase 'the bad person'. Shay witnessed the dog attack and knock the criminal to the ground. Most children would have been scared witnessing this. As Shay had his uniform on it didn't faze him one bit whatsoever. At this point in the day Shay was looking very tired but still wanted to do more.

After lunch and getting some much deserved rest. An important part of Shay's day was to meet with a senior officer. Shay took the oath and was proudly sworn in as a police officer. He was awarded advanced car driving certificates just to name a few. Shay had a fantastic day and as usual he didn't want to go home. We knew it would take him a few days to recover, but just seeing the amount of fun and excitement he had today has made it all worth it for our little man.

Shay enjoyed meeting some fantastic people and we would like to thank each and every one of you for making this day just so perfect. Don't tell Daddy BUT Now he wants to be a FIREMAN!

Sunday, 5 June 2011

Hospital



Following on from my last entry - Shay was hospitalised for 5 days due to an excruciating pain high up on his right side. He had no coughs, colds or infections that we could see at this time. He has been complaining of being in pain for about 2 weeks prior to him going to hospital. Shay suffers from alot of stomach aches especially when he eats so naturally we put it down to this. It's very hard for such a young child to locate exactly where the pain is. That Monday evening while Shay was asleep, he woke up crying and just by listening to his cry you could tell that something wasn't right. So bags packed in a hurry and a quick dash to our local hospital. On arriving Shay's port was accessed, blood cultures taken and IV antibiotics started. When this happens we know he is going to be in for at least 5 days. His blood cultures came back negative meaning that any infection hasn't gone into his blood stream. Shay's CRP came back that he had an acute infection and inflammation somewhere in his body. Shay's tonsils where very large BUT causing him no ill side affects. That very night Shay had an xray which showed nothing unusual. As it was so late they decided to scan Shay the next morning. Morning, afternoon and early evening arrived and still Shay is waiting to be scanned. Shay is still being given IV antibiotics with no sign of the long awaited scan. Funnily enough his pain has completely disappeared. We mention to the doctors about a pancreas test, on Wednesday morning bloods are taken to test his pancreas function. (which came back clear). Late afternoon Shay at lasts goes for the long awaited scan which unremarkable shows nothing wrong. You can see a complete difference in the pictures...Shay is standing up for his xray the first night in hospital. He was looking very pale and tired. By the time he had his scan he had rosy cheeks and full of smiles.
Shay was administrated antibiotics on admission to hospital by IV. This is the quickest way to deal with infections and on previous admissions has worked very quickly with Shay. To me it seems obvious that any infection he had was cleared up very quickly by the antibiotics. I feel the scan, and pancreas function test was taken far to late for it to show anything. I believe Shay might of had an attack of 'Pancreatitis', talking to other parents with children with Pearson's this seems the most probable explanation for his pain. On leaving hospital he still had enlarged tonsils but this is believed to be only a secondary infection (without symptoms) and not the primary cause. So we have left the hospital with no knowledge or understanding of what was wrong with him. All we know is something has happened.....along with the pain, his speech became slurred and his eyelids droopy. It has taken well over a week for his speech to recover to how it was before and still he is not as clear as he was before.
Shay has a very special day coming up, which I will update everyone in a couple of weeks. He is going to be soooo excited and such alot of people have put so much of their time and energy into this for our little man. All we will say at this time is uniforms, dogs, cars, chases and a skidpan! Mix all that with Shay and he is going to have a day to remember.