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 - Gimme a Break, Spring Break
4 min
177
A Rare Collection - Penny For Your Thoughts
18 min
178
Self Care for Your Healthcare with Ehlers Danlo...
36 min
179
Effisode - A Perfect Day for a Walk
5 min
180
Sisters’ Hope Foundation President and Founder ...
33 min
181
Building a Different Kind of Motherhood Experie...
40 min
182
Effisode - Grocery Store Answers
4 min
183
A Rare Collection - Unexpected Findings
17 min
184
A Very Rare and Very Real Adventure with DeSant...
34 min
185
Effisode - Moments
5 min
186
Adapting and Collaborating to Help Bring a Cure...
38 min
187
Effisode - The Unicorns - Random Acts of Kindne...
5 min
188
A Rare Collection - This Is Us
22 min
189
How the Caregivers Mental Health and Physical W...
32 min
190
Effisode - Bathroom Floor Moments
6 min
191
What Happens Now - Baby Boy is a Medical Miracl...
34 min
192
One of the Youngest Children to be Given Treatm...
54 min
193
Effisode - Oh Goody - Anxiety is Visiting
3 min
194
Ambiguous Medical Plans - How to Figure Out a S...
50 min
195
A Rare Collection - New Beginnings
23 min
196
Effisode - Rare Disease Day
3 min
197
A Dads Fight to Survive Cancer and the Heavy Bu...
49 min
198
Create Conversation, Community, and Change with...
42 min
199
Effisode - The Kindness of Strangers
6 min
200
The Bravery of the Brokenhearted - A Big Brothe...
46 min