Today Shay has had another blood transfusion as his hb dropped to 6.9. The last week our brave little man has been fighting tiredness, lack of energy and loss of appetite once again. His eyes have looked extremely tired and red rimmed so we were expecting a transfusion to happen.
Once again our very courageous gorgeous boy has been the model patient in hospital. For 5 long hours he kept the nurses entertained as well as Daddy on his toes.
He done nothing but eat and drink and is now able to tell the nurses where all the different obs equipment should go on his body. Shay will be 2 on the 29th (hard to believe) and looking at him he still looks very young almost as though he is still 18mnths old. We should notice a big difference in his complexion after about 24 hours and of course his energy levels will start to go up, watch out!
Hb - 6.9
WBC - 2.42
Neurofills - 0.33
Plt - 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.
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