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
Episode 138 - When Your Child is Facing the Mos...
36 min
177
Advancing Therapies for Rare Liver Diseases and...
31 min
178
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
179
The Value of Intensive Therapy for Kids with Di...
35 min
180
A Rare Collection - Up At Night
25 min
181
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min
182
The Critical Role of Newborn Screening - Rare M...
37 min
183
Effisode - I Don't Like That
4 min
184
Rare Disease Caregiving Post Childhood with Rar...
40 min
185
Kelley Coleman - Author of You will Feel Better...
34 min
186
Effisode - Gimme a Break, Spring Break
4 min
187
A Rare Collection - Penny For Your Thoughts
18 min
188
Self Care for Your Healthcare with Ehlers Danlo...
36 min
189
Effisode - A Perfect Day for a Walk
5 min
190
Sisters’ Hope Foundation President and Founder ...
33 min
191
Building a Different Kind of Motherhood Experie...
40 min
192
Effisode - Grocery Store Answers
4 min
193
A Rare Collection - Unexpected Findings
17 min
194
A Very Rare and Very Real Adventure with DeSant...
34 min
195
Effisode - Moments
5 min
196
Adapting and Collaborating to Help Bring a Cure...
38 min
197
Effisode - The Unicorns - Random Acts of Kindne...
5 min
198
A Rare Collection - This Is Us
22 min
199
How the Caregivers Mental Health and Physical W...
32 min
200
Effisode - Bathroom Floor Moments
6 min