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
51
The Outlet - How Chris Anselmo Used Writing to ...
39 min
52
A Rare Collection - Wishing Well
15 min
53
Effisode - The Ultimate Rare Disease Resource G...
4 min
54
Doctor and Rare Disease Dad Is On A Mission to ...
47 min
55
Helping Undiagnosed Patients Who Experience Sym...
42 min
56
Effisode - There's No Crying In Baseball
4 min
57
Patients and Caregivers Being Compensated to Te...
20 min
58
Take Part Founders and PYROXD-1 Parents - Matt ...
47 min
59
Effisode - Wheelchairs and Walls
4 min
60
A Rare Collection - Exhausted and Energized
12 min
61
Real Rare Mama Shop Talk - Deciding What We Sha...
38 min
62
Love, Hope and Cure SYNGAP
107 min
63
Every Patient Matters - Discovering, Developing...
39 min
64
Effisode - Rare Disease Day Events
4 min
65
A Rare Collection - To the Moon and Back
22 min
66
Honoring a Husbands Legacy by Finishing His Wor...
26 min
67
Effisode - Barbara Is Real
4 min
68
From Cancer Biologist to Rare Disease Mom - Dig...
28 min
69
Never Give Up - Two Decades of Struggles From D...
53 min
70
Effisode - Seizures Are Stupid
5 min
71
A Rare Collection - New Beginnings
17 min
72
Happiness Is Meant to Be Shared with Author, St...
57 min
73
Effisode - The Friendship Circle
5 min
74
Being Brave, Curious and Motivated to Help Make...
30 min
75
Care Team Prescription - The Importance of Clin...
28 min