Shay has had another cold the last couple of days and a few crackles in his chest. The Doctor has put him back on antibiotics and he is back on his ventolin of 24 puffs a day.
Only last night Alan & I were discussing that we needed to find out Shay's consultants name at Watford General. Amazingly we received a packet in the post this morning from Jemma his nurse at GOSH with his emla cream/plasters and a note saying who the consultant was at Watford and also their mobile number in case we needed anything (very spooky). GOSH have been absoultely fantastic in their care of Shay and we can't praise them enough for all they have done for him.
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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