[MDSPerth]

Chirley, this has been explained to us by one of the medical team Paul is under. The Australian Government has a 'budget' for each patient. Resources allow that firstly they test family, if no match, they then go to the Australian registry. If no match is found then and only then, do they go to the international register. They don't give the international register too much push unless it is urgent because it requires more resources!

This all seems very strange because Paul's medical team were talking about early 2013 for a transplant for Paul when they were sibbling testing.

He is fortunate in that since he has been on Neupogen and EPO he has been symptom free. But, lurking in the background is the knowledge that he has the dreaded monosomy 7 and trisomy 8. Only 7 of the 20 cells tested in his BMB showed no chromosome abnormalities.

I read on this site somewhere and thought it was a very apt quote - something like this - "We were driving our own bus along on our pathway of life, and then suddenly a dreaded thing called MDS jumped on and took over the steering wheel for us."

In this instance, we are at the mercy of both this incidious disease and the funds available from the Australian Government.
But, we continue to remain positive that a match will be found.

It makes you very humble when you read some of the stories on this website.