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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.

Thursday, 5 February 2009

Latest blood counts!

At 7 o'clock this morning we received a phone call from Shay's nurse. After worrying and waiting for exactly 15 hrs (clock watching is extremely stressful would not recommend) for his blood results we finally got them. His haemoglobin is now a whopping 9.4, Platelets 115 and his wbc/neutrophils are only 0.4. Even though they are still very low especially his neutrophils, Shay's hb and platelets have risen 0.2 since his last transfusion. So at least this month he will not need a transfusion thank God.
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5 comments:

  1. Wendy PSat Feb 07, 10:16:00 pm 2009

    Hi Shay,

    Hope you have been enjoying all the lovely snow!

    Great news about the blood test - keep up the good work guys!! Lots of love, Wendy

    ReplyDelete
  2. JuJuSun Feb 08, 12:19:00 pm 2009

    Fab News He is a little fighter. Just love the snow photo's

    Love JuJu. xxx

    ReplyDelete
  3. AnonymousSun Feb 08, 09:39:00 pm 2009

    Great news ! Only heard about your blog today - will keep in touch. Let me know if you need anything.
    Much love
    Karen and co.

    ReplyDelete
  4. KarenSun Feb 08, 09:42:00 pm 2009

    Is this working? Just joined the follower thing - I'm really not good with technology!
    Karen
    x

    ReplyDelete
  5. ShayThu Feb 12, 07:20:00 pm 2009

    Hi Karen

    It is working but all the comments come to me first before I publish, Sorry
    Sharon

    ReplyDelete

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