This news just breaks my heart, Di. I hope you can take some comfort in the fact that her pain is over, at long last. Dee taught us all a great deal, I think, in her young life. Being stricken as she was with TOS as a young teenager robbed her of many rites of passage which many of us have been able to enjoy pre-onset, such as higher education, careers, marriages, having kids of our own, whatever it is that stories like hers helps us to remember to be grateful for in our darkest moments.

The quality of life that Dee was able to have despite the complex chronic pain issues she suffered over the years following her diagnosis any surgeries was because of a loving mother who never gave up, who educated herself and helped countless others in the process.

It is a bitter irony that one of the only meds that brought Dee any relief, or perhaps a combination of meds, may be what slowed her respiratory rate and ultimately caused her untimely death. Di, I have a daughter Dee's age - I think she was around 32? - This is a huge loss for you and your family and believe me will be felt very deeply by all of your extended family members on this forum as well. You are truly loved here. Alison