Will this ever end
Its hungry work taking all this blood in. My first blood transfusion, its never ending.
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 YA SHARON, ALAN, CHRISSY AND SHAY.
ReplyDeleteGOOD TO HEAR SHAY IS STILL AS HAPPY AS EVER, AS I DON'T THINK I HAVE EVER SEEN HIM CRY. GLAD I HAVE READ THE BLOG ABOUT SHAY AS THE INFORMATION I GET FROM BARRY IS SKETCHEY. (U KNOW BARRY)! I WILL KEEP LOGGING ON TO CHECK HIS PROGRESS AND WILL BE DOWN TO SEE YOU SOON. ALL THE BOYS SEND LOVE. SUE XXX
Hi ya I have been reading all about Shay and the blog is a really good idea well done!!! I was just wondering what blood type Shay is?
ReplyDeleteFiona
Thanx Fiona
ReplyDeleteShay is blood group B+
We're not sure what Alan is at the moment hopefully will find out next Tuesday at GOSH. I am not a match for his blood with me being A+