Shay has been poorly since Sunday evening. It started with a high temperature and sickness. Monday morning he was put on antibiotics and Ventolin for his cough. Yesterday Shay was at hospital with suspected chicken pox, he only had the spots down the backs of his legs. It seems our little man has chicken pox but we won't be sure until his blood cultures are ready tomorrow. He is on double strengh Zovirax which will protect Shay from alot of the symptoms of the pox. At the moment no-one knows how his body will respond to the virus especially with him having Pearson's. It's getting more difficult to give him his meds as he is now refusing them point blank. So lots of persuasion is needed but even then it is a major battle.
Hopefully it will turn out to be an uneventful week and he gets better soon.
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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