dude that sounds desperately sad and your mum is in my prayers. i cant imagine what it is like for your family but i truly wish you the very very best..
it truly makes you appreciate how normal ‘huge problems’ people have on a day to day basis are so so unimportant...
good luck and God willing your and your family will have the good days ye so richly deserve.
it does make me realise in some cases in drug trials and i know how important their are but i truly feel there should be a way of getting access to drugs like this if families are prepared to accept the obvious risks.
The problem is lawsuits, IMHO. The drug companies do not want to take a risk in getting sued if they get their medicine out before it was fully tested through drug trials.