Newsletter Signup Contact Donate

Courageous Parents Network

About

Initiatives

Contact Donate Newsletter Signup

Search entire library or by microsite

Media Library

Navigating Medical Complexity Coping With Loss Neurojourney

Search

Search entire library or by microsite

Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

Home > Hope > Themes

SHARE

Videos

Theme: Hope

Sanfilippo/MPS: We hoped she would live to see a cure.

Page: 3 of 3

Sanfilippo/MPS: We hoped she would live to see a cure.

Sanfilippo/MPS: We hoped she would live to see a cure.

The mom of a child with Sanfilippo describes how they thought about experimental trials — Our goal was always quality of life, but if this prolonged her life by some years, then that would give more opportunity for a cure to be available. Her decline had been so slow. Eventually we probably realized it wasn’t coming in time but there was always that hope.

SHARE

25 / 32

Related Resources

Post
A Slapstick Kind of Hope
Post
Hope Is Not a Wish
Post
Diplomas and Diseases
Post
Finding Hope Again in the Shadow of Risk
Event
IN THE ROOM: What does a good day look like?
Post
Holding onto the hope of “BUT she can...”