The Beginning
The Shock of learning the diagnosis
A collection of parents talk about the shock, guilt, denial, the pit.
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The Shock of learning the diagnosis
Julianna’s beginning: Charcot-Marie-Tooth disease
Telling our son’s story
It’s really entering a whole new culture.
Undiagnosed: “28 years and we still don’t know exactly”
Tay-Sachs, Twin fathers and their diagnostic journey with their two children
A New Diagnosis: Finding Your Bearings
A mom: “No matter how blindsided you feel, you will get through it. You are strong enough.”
Docs didn’t look at the Whole Child: It took a year to get the Hurler diagnosis.
The Diagnostic Odyssey: It never occurred to me that it would be fatal.
We felt we better step up and show her that she picked the right parents.
There is a variety of responses.
Sanfilippo: The road to diagnosis
Our first child's fatal diagnosis, with a new pregnancy at same time.
Adapting to the Diagnosis: No Heroics,Focusing on Quality of Life
They were like an old couple: The Gauvin sibling love story.
So I started questioning …. And it was devastating.
I’m like, I don’t need a bucket list right now.
SMA ran in the family, and then it hit us in the face.
I wish there had been more support and fewer decisions at the beginning.
There’s a fine line between hope and acceptance.
Fundraising for Research: I was transported to Ben’s Future and I wasn’t ready for it
One day, I just stopped thinking about it so much.
Families aren't ready for all the information at the beginning.
The doctor was very gentle and also clear that there was no treatment at this time.
We came to the realization that this is the path we’re walking and there is nothing to be done about that.
