When we got told there was no cure for Shay’s illness our world crumbled, every day is hard to keep life fairly normal for both the children. The kindness people are showing us has been totally overwhelming and at times it is difficult to know exactly what to say to people. As knowing what to say brings you back onto that emotional rollercoaster where it is hard to get off once you’re on and staying on it too long is just unbearable.
We would like to say thank you to everyone who has donated to ‘The Shay Murray Fund Account’ we have been lucky enough to have such amazing support and kindness shown to our son Shay through these last few weeks. Words cannot describe how touched we have been by the generosity of the ‘Murchu Duiginn Irish Dancing School’ in London. Chrissy has been dancing at this school since Shay was 3mnths old and they have supported our family throughout Shay’s illness. We would like to say a huge thank you to the people who started the fund in the first place, without them none of this would have happened. Maria, Fiona and Sharon we don’t know how we can ever repay your kindness for thinking of Shay and fundraising in such a short time. The whole school are giving us memories of our son that no matter what happens will be with us for eternity to us these memories will be priceless. Not forgetting to thank our friends, families, our community, and complete strangers who have donated. You have all surrounded our family with love and support. We can truly say, all of you special people have been supportive and that has kept our family together during this very trying time. Friends, family and people we don’t even know have opened their hearts and wallets to help Shay in sending him to that once in a lifetime holiday to Disney. Your help and support has meant so much to us all, words cannot express our gratitude for you enough. Your generosity will be remembered always. Again, we thank you all on behalf of Shay and the rest of the family and look forward to sharing some very special pictures of Shay at Disney and for giving us the most magical memories of our son.
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.
Monday, 24 August 2009
Saturday, 15 August 2009
Thanks a million
We would like to say a huge thank you to Simon who has done absoultely fantastic in raising funds for 'Great Ormond Street Hospital' on Shay's behalf. Simon's justgiving page has done brillant in the short amount of time that he has had to raise funds. We are sure that it has been an enjoyable experience as well. Simon alongside Leonie has made a huge impact on Shay's life and it is a fantastic feeling knowing Shay has so many people around him who is constantly looking out for his wellbeing. Thanks Si!
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