Life has been steady of late, Shay has had two transfusions since the 28th August and has remained healthy even though his neutrophill count is very low and along with his platelet count.
I have heard some devasting news today about a very special little girl called Cadence. Cadence has been battling with pearsons since she was born. I have been talking to her Mum the last few months who lives in Alaska. Cadence was only 5 years old when she sadly passed away on the 2nd October. Words can't describe how this has left us feeling and I can't begin to imagine the raw pain and agony Cadence's family are going through. Cadence will alway's remain in my thoughts and prayers, God bless her. Say a prayer for our little man as he is at the beginning of pearsons and needs all the miracles that God can give 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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