“We were not ready for her actual diag...

A diagnosis in-utero of Trisomy 18: Bein...

In the early scary days, with shock of d...

A mother’s need to get as much informa...

Moving beyond the anger after the death:...

A poor diagnosis in the NICU, delivered ...

When the genetic condition is VERY rare ...

I wanted to be strong for her but there ...

A genetic diagnosis: I had to get over t...

The early months post-diagnosis: grief, ...

Marfan Syndrome: He had 26 doctors and s...

Talking About the Prognosis - Parents an...

A New Diagnosis: Finding Your Bearings

The Shock of learning the diagnosis

Mom wants to know what it’s going to b...

We came to the realization that this is ...

The doctor was very gentle and also clea...

Adapting to the Diagnosis: No Heroics,Fo...

Our first child's fatal diagnosis, with ...

SMA ran in the family, and then it hit u...

I wish there had been more support and f...

Chaplain: “When this happens to me, to...

There will be more. Don’t live your li...

It’s really entering a whole new cultu...

There is a variety of responses.

There’s a fine line between hope and a...

SW: Guilt is natural

I’m like, I don’t need a bucket list...

Fundraising for Research: I was transpor...

Families aren't ready for all the inform...

People manage their feelings very differ...

How is this my life?

Creating a safe place for each person to...