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
226
Effisode - The Kids Do NAPA Center in Los Angeles
4 min
227
Strength - How We View It, Define It and Move T...
34 min
228
Finding Beauty and Connection When Raising a Me...
46 min
229
Effisode - Road Trip to NAPA Center
4 min
230
A Rare Collection - Rare Disease Storytelling w...
24 min
231
Strength and Inspiration Found Through Rare Dis...
33 min
232
Effisode - Ford Goes to Kindergarten
4 min
233
Five Common Errors Made by Recently Diagnosed, ...
42 min
234
A Mother's Story of Finding Your People, Accept...
33 min
235
Effisode - From the Sidelines
6 min
236
Finding Peace and New Energy to Dig Deeper Afte...
27 min
237
A Rare Collection - Rare Disease Storytelling -...
17 min
238
Effisode - Rare and Relatable - Rare Disease St...
4 min
239
The 12 Commandments to guide you when you're st...
48 min
240
Leading the World Gene Therapy Program for CTNN...
39 min
241
Effisode - Your Kids, My Kids - They're All Per...
5 min
242
Enabling Rare Disease Treatments with Sanath Ku...
28 min
243
A Rare Collection- Re-Runs with Patrick James L...
18 min
244
Effisode - Family Camp, Annoying Brothers, and ...
4 min
245
Mental Health and living with chronic stress wi...
50 min
246
Discovering New Treatments for Rare Genetic Dis...
32 min
247
Effisode - Heatwaves and a Happy Birthday
5 min
248
Living with Persistent Uncertainty without a Ra...
34 min
249
A Rare Collection - Superheroes
18 min
250
Effisode - Making Cents of it All
6 min