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
Advancing Therapies for Rare Liver Diseases and...
31 min
177
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
178
The Value of Intensive Therapy for Kids with Di...
35 min
179
A Rare Collection - Up At Night
25 min
180
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min
181
The Critical Role of Newborn Screening - Rare M...
37 min
182
Effisode - I Don't Like That
4 min
183
Rare Disease Caregiving Post Childhood with Rar...
40 min
184
Kelley Coleman - Author of You will Feel Better...
34 min
185
Effisode - Gimme a Break, Spring Break
4 min
186
A Rare Collection - Penny For Your Thoughts
18 min
187
Self Care for Your Healthcare with Ehlers Danlo...
36 min
188
Effisode - A Perfect Day for a Walk
5 min
189
Sisters’ Hope Foundation President and Founder ...
33 min
190
Building a Different Kind of Motherhood Experie...
40 min
191
Effisode - Grocery Store Answers
4 min
192
A Rare Collection - Unexpected Findings
17 min
193
A Very Rare and Very Real Adventure with DeSant...
34 min
194
Effisode - Moments
5 min
195
Adapting and Collaborating to Help Bring a Cure...
38 min
196
Effisode - The Unicorns - Random Acts of Kindne...
5 min
197
A Rare Collection - This Is Us
22 min
198
How the Caregivers Mental Health and Physical W...
32 min
199
Effisode - Bathroom Floor Moments
6 min
200
What Happens Now - Baby Boy is a Medical Miracl...
34 min