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everything secure. I see it in other families that I know who go through a medical crisis

with tremendous unknowns around it. And honestly, a lot of these situations are situations in which,

say, 50 years ago, but maybe even 15 years ago, the person might have just died.

But we have a medical infrastructure that can prolong this moment of uncertainty.

And maybe we call it a moment of hope, but also a moment of great uncertainty. And wow, we've created new limboes. And sometimes we ask people to live there for a very long time.

And I don't think that we have an amazing capacity for dialogue around what those limboes feel like, how to exist there,

and when staying there is the right thing.

I want you to think about the person you love most in the world. Go ahead. Really? Imagine them.

Their laugh, their smile, the way they make you feel. Now I want you to imagine if within a matter

of weeks this person's health and vitality was completely gone, that they don't seem to

recognize you. They can't communicate with you. And they will now require 24-hour care.

But on top of that, you have no idea what is wrong with them, and neither does anyone else.

At only 25 years old, Sonia Valab's life took an unexpected turn with the swift and relentless progression of her

beloved mother's illness, eventually diagnosed as prion disease, a rare and fatal brain disorder.

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