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