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