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
151
Half of the Day She's a Diversity Champion, the...
35 min
152
A Rare Mama Bear - Being a Single Parent and Ad...
27 min
153
Effisode - Global Genes RARE Disease Patient Ad...
5 min
154
Picking the Brain of a Rare Disease Dad - With ...
27 min
155
A Rare Collection - Remember Who You Are
24 min
156
Effisode - Find Your Fairy Godmother
5 min
157
Episode 138 - When Your Child is Facing the Mos...
36 min
158
Advancing Therapies for Rare Liver Diseases and...
31 min
159
Effisode - Guilt - Ain't Nobody Got Time for That
3 min
160
The Value of Intensive Therapy for Kids with Di...
35 min
161
A Rare Collection - Up At Night
25 min
162
Effisode - RARE Entrepreneur Bootcamp Warriors
4 min
163
The Critical Role of Newborn Screening - Rare M...
37 min
164
Effisode - I Don't Like That
4 min
165
Rare Disease Caregiving Post Childhood with Rar...
40 min
166
Kelley Coleman - Author of You will Feel Better...
34 min
167
Effisode - Gimme a Break, Spring Break
4 min
168
A Rare Collection - Penny For Your Thoughts
18 min
169
Self Care for Your Healthcare with Ehlers Danlo...
36 min
170
Effisode - A Perfect Day for a Walk
5 min
171
Sisters’ Hope Foundation President and Founder ...
33 min
172
Building a Different Kind of Motherhood Experie...
40 min
173
Effisode - Grocery Store Answers
4 min
174
A Rare Collection - Unexpected Findings
17 min
175
A Very Rare and Very Real Adventure with DeSant...
34 min