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
One of the Youngest Children to be Given Treatm...
54 min
202
Effisode - Oh Goody - Anxiety is Visiting
3 min
203
Ambiguous Medical Plans - How to Figure Out a S...
50 min
204
A Rare Collection - New Beginnings
23 min
205
Effisode - Rare Disease Day
3 min
206
A Dads Fight to Survive Cancer and the Heavy Bu...
49 min
207
Create Conversation, Community, and Change with...
42 min
208
Effisode - The Kindness of Strangers
6 min
209
The Bravery of the Brokenhearted - A Big Brothe...
46 min
210
A Rare Collection - Lullabies
26 min
211
Effisode - The Magic of Friendship at the North...
6 min
212
Being Mindful of the Sibling Experience with Fo...
46 min
213
The Importance of Newborn Screening in Every St...
34 min
214
Effisode - Grief and Joy are Mingling this Holi...
7 min
215
Turkey Soup for the Soul and Stories About Rare...
44 min
216
A Rare Collection - Rare Disease Storytelling -...
13 min
217
Effisode - Find the Connection
5 min
218
Finding Hope From Diagnosis to Action - LMNA Re...
31 min
219
The Joy Doesn't Need to be Ambiguous Even Thoug...
40 min
220
Effisode - Cinderella, Cinderella
4 min
221
Rare Book Club with Co-Host Patti Hall - Featur...
44 min
222
Raising a Son with Batten Disease and the Impor...
40 min
223
Effisode - Two Disabled Dudes
40 min
224
A Rare Collection - Rare Disease Storytelling w...
21 min
225
How We Can Balance and Understand the Unique St...
41 min