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