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
126
The Critical Role of Newborn Screening - Rare M...
37 min
127
The Unique Expertise of a Genetic Counselor - H...
40 min
128
Effisode - I Don't Like That
4 min
129
Rare Disease Caregiving Post Childhood with Rar...
40 min
130
Kelley Coleman - Author of You will Feel Better...
34 min
131
Effisode - Gimme a Break, Spring Break
4 min
132
A Rare Collection - Penny For Your Thoughts
18 min
133
Self Care for Your Healthcare with Ehlers Danlo...
36 min
134
Effisode - A Perfect Day for a Walk
5 min
135
Sisters’ Hope Foundation President and Founder ...
33 min
136
Building a Different Kind of Motherhood Experie...
40 min
137
Effisode - Grocery Store Answers
4 min
138
A Rare Collection - Unexpected Findings
17 min
139
A Very Rare and Very Real Adventure with DeSant...
34 min
140
Effisode - Moments
5 min
141
Adapting and Collaborating to Help Bring a Cure...
38 min
142
Effisode - The Unicorns - Random Acts of Kindne...
5 min
143
A Rare Collection - This Is Us
22 min
144
How the Caregivers Mental Health and Physical W...
32 min
145
Effisode - Bathroom Floor Moments
6 min
146
What Happens Now - Baby Boy is a Medical Miracl...
34 min
147
One of the Youngest Children to be Given Treatm...
54 min
148
Effisode - Oh Goody - Anxiety is Visiting
3 min
149
Ambiguous Medical Plans - How to Figure Out a S...
50 min
150
A Rare Collection - New Beginnings
23 min