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