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About Me
- Shay
- 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, 17 October 2009
A New Arrival!!
Shay has a cough and slight cold at the moment. Luckliy enough we caught it in the early stages and the antibiotics seem to be keeping it at bay. Shay is a tough little cookie who even though he has been tired the last couple days continually pushes himself and will not give in to how grotty he feels. Shay has had the holiday of a lifetime and the next in the list of dreams is a puppy :0). We wanted Shay to experience having a pet in the house. We have found the most adorable pup who is a Shihtzu. 'Buster' as Shay and Chrissy have called him will become the 4th member of our family on the 31st October. Just seeing Shay holding the pup at 3 weeks old was precious, he absoultely adored the pup. Buster was the calmest of all the pups and when Shay was holding him he even fell asleep. I'll post the picture of Shay and Buster tommorow.
Tuesday, 6 October 2009
Always in our hearts
Life has been steady of late, Shay has had two transfusions since the 28th August and has remained healthy even though his neutrophill count is very low and along with his platelet count.
I have heard some devasting news today about a very special little girl called Cadence. Cadence has been battling with pearsons since she was born. I have been talking to her Mum the last few months who lives in Alaska. Cadence was only 5 years old when she sadly passed away on the 2nd October. Words can't describe how this has left us feeling and I can't begin to imagine the raw pain and agony Cadence's family are going through. Cadence will alway's remain in my thoughts and prayers, God bless her. Say a prayer for our little man as he is at the beginning of pearsons and needs all the miracles that God can give him.
I have heard some devasting news today about a very special little girl called Cadence. Cadence has been battling with pearsons since she was born. I have been talking to her Mum the last few months who lives in Alaska. Cadence was only 5 years old when she sadly passed away on the 2nd October. Words can't describe how this has left us feeling and I can't begin to imagine the raw pain and agony Cadence's family are going through. Cadence will alway's remain in my thoughts and prayers, God bless her. Say a prayer for our little man as he is at the beginning of pearsons and needs all the miracles that God can give him.
Friday, 2 October 2009
Even grown ups have to get in on the act!!!
Thursday, 1 October 2009
A very magical trip!!
Shay absoultely adored the Disney characters, which totally amazed us. We at least thought he would have run screaming from at least some of them. By the end of the first week he was running around with his autograph book and pen for the characters to sign. Shay being Shay absoultely adored Cinders, he was picked out at one character dinner to have a dance with her. Swaying to the music and smiling at Cinders with those beautiful eyes was enough to bring tears to our eyes. What a fantastic time Shay had, even now he looks through his autograph book and we sit and talk about everyone who signed.
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