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