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