As predicted Shay is enjoying full health and back to his normal self again. He is a quirky little boy who has his own little ways and habits now. If routine isn't followed in the house he will soon put you right. Even when he uses the potty everyone has to look and cheer, then he has this ritual of saying goodbye to whatever is in the pot! Every night without fail he asks to have Vick's on his chest and back. Everything has to be done in the correct order, otherwise he creates havoc.
Now March is nearly upon us he knows his birthday is very near. Looking at him it is hard to believe he will be 3 at the end of the month. What a magical birthday that will be for him and such a great milestone with his health.
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.
Hi Sharon
ReplyDeleteSo glad Shay is happy and well.
Thinking of you
Laura, Steve and Grace x
Thank you Laura, long to continue we hope
ReplyDelete