Shay has been very lucky and so far he has escaped the dreaded chicken pox virus. He has been very subdued today and not involving himself in activities at his childminders (Sally & Mick). Apart from his love of tidying up which for a two year old he is quite remarkable in that he tidys his toys up after him; that is mainly all that he has involved himself with today.
Shay is back at GOSH next week so maybe they might have some results from Shay's MDS/Pearson's results. It has been a few months since he had the test so we are expecting it to be back any time soon.
Latest blood results showed Shay's Hb is the highest it has ever been, but that is not the only important ones. He is still 'Neutropenic' so we are still protecting him from even the basic of colds. His platelets are still on the low side but yet again we haven't noticed any major bruising on him. Today we thought as well as his childminders that he does look paler and it looks like his hb is on the way down again, we will know for sure next week
Hb - 10.7
Neurophills - 0.49
WBC - 2.91
Platelets - 119
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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