Why are we allowing early-stage sufferers to die?

Emily's disease started out mildly. Emily died at age 30.

Here is Emily telling us her story:

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. … This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.
— Emily Collingridge

There is still no research into its most severe form. There is still no support.

However, the key points for this article are these:

Emily's disease started out mildly. Emily died at age 30.