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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.

Friday, 2 April 2010

Home again


Shay at last had his blood transfusion today without any problems. We have put in an official complaint with the hospital about the system and process of ordering the blood. This appears to fall to one person when the results are telephoned through to the ward, the doctor on duty. This one person is responsible for ordering the correct blood and ensuring also that they actually check Shay's file for what exactly is needed. Somewhere along the line the process of ordering is failing and this is having an impact on the standard of care Shay receives. I dread the future when something serious might happen, how will the hospital cope when such little things are going wrong now.
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12th Blood Transfusion

Shay was up bright and early this morning ready to go into hospital for his transfusion.He was in dire need of a lay in but his health must come first. He has been complaining of his legs hurting all week and his diet at the moment is extremely poor. Shay has not walked very far this week and is always asking to be picked up or to have his buggy.
Yet again our local hospital has completely ruined his day by not having his blood ready. Someone along the line at the hospital has seriously made a mistake of not ordering irradiated blood!! After a year and a half how can they still be getting things wrong you have to ask yourself. It is there in black and white in his notes exactly what blood he needs.
So now Shay is waiting around until 3pm for his blood to be ready. Maybe this does not seem to be much of a problem; but by the time he is hooked up Shay will be lucky to be home by 8pm. Shay suffers greatly from tiredness and this is why we ask for morning appointments in the first place. Do Doctors actually look at what is wrong with him? We spend most of our time educating people on mitochondrial disease and most go out of their way to make things as easy as possible for Shay. Hopefully things will go more smoothly once Shay is at the hospital, we will just have to wait and see.
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