At last! Paula accessed a vein first time and his Enzyme Replacement Therapy continued without any problems. Ryan had a reasonable nights sleep and looked fairly relaxed. I got half a smile to match the half I got last time I saw him.
It looks as if ASGNSS, who fund ERT, are to be disbanded, which leaves the future of Ryan's treatment in the balance. Whilst ERT  is not a cure, it prevents progression of the disease where there is no central nervous system involvement. So, it's letters to our MP, David Cameron and anyone else we think can help.