Shay is becoming more aware of what is happening when he is having blood tests. It's very hard now to watch and to hold him when this is being done. As he gets older he is starting to become scared and panicky when the needle is coming towards his port. This does not hurt him as he has emla cream on the site but you can see in his face now he is scared.
His last transfusion was 4 weeks ago and his results are fantastic considering this. His HB 10.3, his neutrophills 1.19 the highest its been and his platelets 89. Our first thought was his marrow is starting to produce more healthy cells fantastic, this was quickly followed by panic. We cannot help but look more into the future it's no good burying our heads in the sand and ignoring facts. Shay's metabolic consultant did say that Shay's bone marrow would return to normal within 1 to 1 1/2 years but the defective DNA will accumulate elsewhere in Shay's organs causing more damage that unlike the bone marrow does not repair itself. All we can do now is to carry on with the blood tests to see what is happening and to be even more observant with our little man.
Shay is such a contented, happy little boy at the moment who I can't imagine being without. I love his hugs and kisses, the way he laughs when you tickle him brings you absolute pleasure. Even when he is being a rascal!! the other day I was putting the rubbish out and he quickly ran behind me banged the door and turned the key. Looking at him through the porch window laughing even made me laugh. It took alot of persuading to get him to turn the key to let me back in.
I would like to thank everyone who has supported Shay this year and especially all of the fund raising for our little boy. Shay's childminders Sally & Mick we would like to say thank you for all the money that you have donated to GOSH on Shay's behalf and the consideration and support you have shown our family. Simon and the team in West Hamstead who raised £2560 for GOSH a huge thank you from all of us. To everyone at the Murchu-Duiginn Irish dance school who raised a substantial amount of money to send Shay to Disneyland in Florida. The kindness you have shown to our family will always be remembered and we can't thank you enough, our memories will last forever. Also not forgetting people we don't even know who has sent in money to the Shay Murray fund account. People who don't know Shay have shown so much kindness this year to our family.
We would like to wish you all a very Happy Christmas and a prosperous new year.
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.
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