Shay has quickly gone from being healthy to being poorly again. He has an eye infection in both eyes and his cough is back so he is on a course of antibiotics, eye ointment and his inhalers.
He has spent a rough day in hospital today having his transfusion. All he wanted to do was be at home and sleep. His eyes are really hurting him at the moment and they are constantly streaming which is irritating them further. Shay has been fantastic today, especially with the nurses. Hopefully Shay will have a quick recovery and get back to the cheeky, happy boy we know.
Hb - 8
Platelets - 95
Neutrophills - 0.95
WBC - 2.91
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.
I can't wait for spring either!
ReplyDeletewell done with the potty training :)
again, let us know if we can ever do anything.
much love
karen and Co
x x x x
Thank you Karen
ReplyDeleteShay is doing fab at the moment
hopefully see you all soon
x x x x