About Me

My photo
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.

Friday 11 July 2014

Shay worried about moving to Junior school

Tonight Shay was in bed and not in a good mood, he called me and just wanted me to sit with him. After about 10 minutes he says "I don't like juniors, I will miss my friends. I don't want to leave infants"
 
I do my utmost to reassure him that he will see his friends and that he can always pop into infants whenever he wants. He says "I cant pop in every day" (This tells me its more than his friends he does not want to leave, but his teacher / welfare lady). I have told him he can pop in to see his infants teachers anytime.
 
Shay had me with a tear or two rolling down my face, when I looked at him he had tears rolling down his face,
 
Shay fell asleep, but the picture looks like he was in a deep thought before he fell asleep.
 
Shay does not like change, I wish we could keep his teachers and his special people with him. They are worth the weight in gold.
 
 The lady with shay is one of his special teachers. This year would have been so much harder without her. Thank you.
 
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)