Shay has had direct contact with a friends daughter who developed chickenpox. Our friend was so distraught over the possibility of Shay catching pox as she knows the implications that this can have on Shay's health. Even someone coming around the house with a cough or cold can seriously make Shay extremely ill. It is all very easy to forget what is wrong with him as he does look healthy unless he needs a transfusion. We have protected him the last few months from colds,coughs,etc and so far this year he has not been seriously ill which is fantastic for Shay.
After numerous phonecalls to the hospital it was decided for Shay to have anti-viral drugs for 7 days. This is just a safety measure and if he does get lesions he will have an injection to help him through the illness.
Shay has been fantastic since his last transfusion his speech is coming along great now. Each day he is saying at least four new words his favourite word of the week has been 'Sally'. Sally is one of Shay's childminders and he is now following her around constantly calling for 'Salllllly'.
Shay has a blood test on Friday and we will post the results then.
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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