Shay had his usual appointment at GOSH today and more bloods taken as one of the tests failed and it has to be redone for him.
Since his blood transfusion Shay looks the picture of health and even having rosy cheeks occasionally :) His complexion is fantastic at the moment and has just as much if not more energy than the average 2 year old.
We did find out some news today and not good. Alan & I are not a match for Shay's tissue type so GOSH will be going onto the donor registry looking for a match for him. A huge disappointment for us, we can't explain how it makes us feel but pretty much useless in helping our little boy at the moment.
Friends and family have been absoultely brillant in offering to donate their marrow for our gorgeous boy. We have been totally overwhelmed with the amount of people who have offered to be a donor. We won't be testing individual people as this is time consuming, expensive and would be absoultely stressful waiting for individual results to come in. Did you know that there are more tissue types than the worlds population. Alan & I are now registering as bone marrow donors so that we can help others and give life to another child or adult.
For anyone wanting to help Shay, Please please please join the bone marrow registry. You never know it could actually be YOU who will be a perfect match for him. If not think about other children who are much worse than Shay and as yet have not had any luck in finding a donor. If you don't match Shay then maybe you could bring health & happiness to another family out there who deserves it just as much as our little boy.
Shay's latest counts;
Hb - 10.3 (Absoultely brillant result, thanks to his transfusion)
Neurophil - 0.55
WBC - 3.53
Platelets 110
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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