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
176
Effisode - Moments
5 min
177
Adapting and Collaborating to Help Bring a Cure...
38 min
178
Effisode - The Unicorns - Random Acts of Kindne...
5 min
179
A Rare Collection - This Is Us
22 min
180
How the Caregivers Mental Health and Physical W...
32 min
181
Effisode - Bathroom Floor Moments
6 min
182
What Happens Now - Baby Boy is a Medical Miracl...
34 min
183
One of the Youngest Children to be Given Treatm...
54 min
184
Effisode - Oh Goody - Anxiety is Visiting
3 min
185
Ambiguous Medical Plans - How to Figure Out a S...
50 min
186
A Rare Collection - New Beginnings
23 min
187
Effisode - Rare Disease Day
3 min
188
A Dads Fight to Survive Cancer and the Heavy Bu...
49 min
189
Create Conversation, Community, and Change with...
42 min
190
Effisode - The Kindness of Strangers
6 min
191
The Bravery of the Brokenhearted - A Big Brothe...
46 min
192
A Rare Collection - Lullabies
26 min
193
Effisode - The Magic of Friendship at the North...
6 min
194
Being Mindful of the Sibling Experience with Fo...
46 min
195
The Importance of Newborn Screening in Every St...
34 min
196
Effisode - Grief and Joy are Mingling this Holi...
7 min
197
Turkey Soup for the Soul and Stories About Rare...
44 min
198
A Rare Collection - Rare Disease Storytelling -...
13 min
199
Effisode - Find the Connection
5 min
200
Finding Hope From Diagnosis to Action - LMNA Re...
31 min