We are about to embark on a Bone Marrow Transplant (BMT) for William at Great Ormond Street Hospital to cure him of Wiskott-Aldrich Syndrome (WAS) (for more info on WAS see http://www.primaryimmune.org/pubs/book_pats/e_ch07.pdf,
http://www.emedicine.com/med/topic1162.htm)
William was diagnosed with WAS when he was just 4 months old following an infection. We are fortunate that he has kept very well since then with only 2 hospital admissions but the mutation of the gene that he has is the most severe expression and he produces none of the WAS protein. Without a BMT the prognosis is very poor. We have been SO fortunate that someone has offered to donate their bone marrow and are more grateful than we can ever express for the opportunity that he is giving William.
William currently takes a daily antibiotic and we give him extra antibodies (weekly sub cut for those who like the nitty gritty) which has kept him well so far (touch wood). His ezcema is moderate and those of you who see him regularily will be familiar with the bruises that the mildest of knocks produces.
We will try and post regularly to this blog so that you all, our lovely family and friends can find out how he is doing.
http://www.emedicine.com/med/topic1162.htm)
William was diagnosed with WAS when he was just 4 months old following an infection. We are fortunate that he has kept very well since then with only 2 hospital admissions but the mutation of the gene that he has is the most severe expression and he produces none of the WAS protein. Without a BMT the prognosis is very poor. We have been SO fortunate that someone has offered to donate their bone marrow and are more grateful than we can ever express for the opportunity that he is giving William.
William currently takes a daily antibiotic and we give him extra antibodies (weekly sub cut for those who like the nitty gritty) which has kept him well so far (touch wood). His ezcema is moderate and those of you who see him regularily will be familiar with the bruises that the mildest of knocks produces.
We will try and post regularly to this blog so that you all, our lovely family and friends can find out how he is doing.
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