Periagoge
Scenario

How to parent a child with a life-limiting rare disease

My son's condition means he'll likely die before age thirty and I find myself simultaneously trying to make every moment count and also just living normally because the alternative is paralyzing.

More people experience this than they realize.

What we've seen

The knowledge of abbreviated time creates an impossible tension between hypervigilant meaning-making and the necessity of ordinary life.

Your guide for this
Dipa
Dipa works with people navigating exactly this kind of situation.
Ideas that help explain it
Worth thinking about

“Where Are You with Rare and orphan conditions?”

Peri

Peri can explain why this happens, help you decide if this is the right situation for you, and point toward the right journey or coach.

If this sounds familiar, the Library can help you find the bigger picture.