Shay had a fantastic birthday yesterday and this year managed to open his presents all by himself much to Chrissy's annoyance as she normally helps him.
As a very special present to our little darling, yesterday we registered to become donors at Harrow lesiure centre and will be on the registry in 3 weeks. A huge thankyou to everyone who was able to make it yesterday as this shows great support for Shay and others like him. I know some of you were unable to register due to the fact the cut off for donating is 40, but once you are on the list you can donate until you are 60. I know this was frustrating for some as 40 is an extremely young age, Alan has only just made it by a few short months :0)
There is another clinic at the end of the month in Harrow and we will post the details as we get them.
Thankyou all for your continuing support of Shay
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, 30 March 2009
Tuesday, 24 March 2009
Tissue Match
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
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
Wednesday, 18 March 2009
Tuesday, 17 March 2009
2nd Blood Transfusion
Today Shay has had another blood transfusion as his hb dropped to 6.9. The last week our brave little man has been fighting tiredness, lack of energy and loss of appetite once again. His eyes have looked extremely tired and red rimmed so we were expecting a transfusion to happen.
Once again our very courageous gorgeous boy has been the model patient in hospital. For 5 long hours he kept the nurses entertained as well as Daddy on his toes.
He done nothing but eat and drink and is now able to tell the nurses where all the different obs equipment should go on his body. Shay will be 2 on the 29th (hard to believe) and looking at him he still looks very young almost as though he is still 18mnths old. We should notice a big difference in his complexion after about 24 hours and of course his energy levels will start to go up, watch out!
Hb - 6.9
WBC - 2.42
Neurofills - 0.33
Plt - 126
Once again our very courageous gorgeous boy has been the model patient in hospital. For 5 long hours he kept the nurses entertained as well as Daddy on his toes.
He done nothing but eat and drink and is now able to tell the nurses where all the different obs equipment should go on his body. Shay will be 2 on the 29th (hard to believe) and looking at him he still looks very young almost as though he is still 18mnths old. We should notice a big difference in his complexion after about 24 hours and of course his energy levels will start to go up, watch out!
Hb - 6.9
WBC - 2.42
Neurofills - 0.33
Plt - 126
Monday, 2 March 2009
Shay and not complying to the norm!
Blood tests as usual today and Shay was booked into Watford general for his blood transfusion tommorow as his counts have been diving lately. Then his blood counts came back and our little man has decided against a transfusion this time round. His hb has now actually gone back up from 7.1 to 7.4 even his community nurse was amazed. They are going to do another blood test next week as its still on the verge but to us this shows that his marrow is still trying to fight back and work how it should which is only a big big plus for Shay.
Hb 7.4
Platelets 114
Neurophils 0.13
Shay's neurophils are the lowest they have ever been this is now a big worry for us as he becomes more prone to infections especially chicken pox which has started making its rounds within the local nurserys.
Hb 7.4
Platelets 114
Neurophils 0.13
Shay's neurophils are the lowest they have ever been this is now a big worry for us as he becomes more prone to infections especially chicken pox which has started making its rounds within the local nurserys.
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