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