Shay was on great form today and we got him dressed and out of the house before he could even think of his breakfast this morning.
His biopsy went very smooth for Shay and even with the gas mask on him he slowly went to sleep. Unlike last time where his eyes were rolling and he was struggling.
The only problem they had (Shay has to have at least one) was with the removal of the core of bone marrow, another doctor was called in to assist with this and the problem was quickly fixed. All the time Shay was inside with the doctors, Alan and I were trying to look up the corridor through the glass doors timing when he would be out. I'm sure next time there will be curtains put in place to stop us questioning every nurse that leaves through those doors :0).
Blood results to follow tommorow
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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