Periagoge
Scenario

How couples plan for a rare disease child's future

Our son's rare syndrome means he'll never live independently and my wife and I are trying to plan for after we're gone, but every conversation about his future care ends in one of us shutting down because the reality feels too heavy to hold together.

More people experience this than they realize.

What we've seen

The weight of impossible decisions creates avoidance that threatens the very planning that love demands.

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.