Shay had his two weekly blood test yesterday. As always he shows remarkable courage and strengh for a two year old and is now so use to having blood taken from him that he even tries this on his beloved Ted. Most two year olds would run screaming from the room with the amount of needles that our darling boy has seen.
His results were a bit of a shock yesterday as he only had his transfusion two weeks ago and we thought they would be on the up rather than down again. To say the least Shay has changed personality since the last transfusion he has become scatty and a joker (even his childminders Sally & Mick have noticed a huge difference in him). The dreaded Tesco shop with Shay can be a major event! Even though Daddy for some unknown reason never has problems when the boys our out shopping together (more likely that Daddy lets him pick everything up)
Shay's latest results;
Hb - 9.3
Neurophills - 0.39
WBC - 2.88
Platelets - 126
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.
Hello Sharron,Alan,Chrissy and Shay
ReplyDeleteHope every think is going well with Shay it was lovely to see you hope to see you soon love from
Aunty Sherylyn and Catherine xxxxx
Hello Sharron Alan Chrissy and shay
ReplyDeletehope every think is going well with shay and it was lovely to see you and shay having a good day hope to see you all soon
Love from Aunty Sherylyn and Catherine