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
Effisode - Presents, Portraits and Beyond the D...
3 min
127
The Clinical Pharmacist - Why They Are A VIP Fo...
38 min
128
How Far We've Come - A Look at the FOXG1 Resear...
44 min
129
Effisode - Fire and Ice
9 min
130
Your Career and Personal Life Collide - Senior ...
38 min
131
A Rare Collection - Beep, Beep, Beep
21 min
132
Effisode - The List
7 min
133
A Mom's Advocacy For Her Son Who Has Hemophilia...
36 min
134
Social Security Disability Revealed - Why It's ...
52 min
135
Effisode - Chasing Greenlights
4 min
136
Medical Student - Urvi Gupta Joins the Global G...
22 min
137
The Effects of Rare Disease on Relationships an...
42 min
138
Effisode - Gravity
4 min
139
A Rare Collection - Batten Down the Hatches
15 min
140
CRELD1 Dadvocate Paying the Ultimate Price - Se...
49 min
141
Effisode - Gilmore Girls, Pumpkin Spice, and Baja
3 min
142
A Groundbreaking Gene Therapy In Record Time to...
30 min
143
Improving Inclusion Practices in Schools with t...
37 min
144
Effisode - Shake It Off
6 min
145
A Rare Collection - Underestimated
18 min
146
Rare Friends Forever - Hanging Out and Showing ...
39 min
147
Effisode - Inclusion Revolution
2 min
148
Rare Disease Families Have Plenty of Hope - Wha...
38 min
149
Together We Can Cure Single-Gene Disorders Star...
42 min
150
Effisode - Montana or Bust
3 min