Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
201
A Rare Collection - Lullabies
26 min
202
Effisode - The Magic of Friendship at the North...
6 min
203
Being Mindful of the Sibling Experience with Fo...
46 min
204
The Importance of Newborn Screening in Every St...
34 min
205
Effisode - Grief and Joy are Mingling this Holi...
7 min
206
Turkey Soup for the Soul and Stories About Rare...
44 min
207
A Rare Collection - Rare Disease Storytelling -...
13 min
208
Effisode - Find the Connection
5 min
209
Finding Hope From Diagnosis to Action - LMNA Re...
31 min
210
The Joy Doesn't Need to be Ambiguous Even Thoug...
40 min
211
Effisode - Cinderella, Cinderella
4 min
212
Rare Book Club with Co-Host Patti Hall - Featur...
44 min
213
Raising a Son with Batten Disease and the Impor...
40 min
214
Effisode - Two Disabled Dudes
40 min
215
A Rare Collection - Rare Disease Storytelling w...
21 min
216
How We Can Balance and Understand the Unique St...
41 min
217
Effisode - The Kids Do NAPA Center in Los Angeles
4 min
218
Strength - How We View It, Define It and Move T...
34 min
219
Finding Beauty and Connection When Raising a Me...
46 min
220
Effisode - Road Trip to NAPA Center
4 min
221
A Rare Collection - Rare Disease Storytelling w...
24 min
222
Strength and Inspiration Found Through Rare Dis...
33 min
223
Effisode - Ford Goes to Kindergarten
4 min
224
Five Common Errors Made by Recently Diagnosed, ...
42 min
225
A Mother's Story of Finding Your People, Accept...
33 min