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
301
Physical and Emotional Well-Being for the Careg...
ONCE UPON A GENE - EPISODE 040
46 min
302
Next Steps - A Journey Through CRPS to an Above...
ONCE UPON A GENE - EPISODE 039
34 min
303
Rare Like Us with Taylor Kane
ONCE UPON A GENE - EPISODE 038
37 min
304
Founder of LakiKid - Sensory Tools for Home and...
ONCE UPON A GENE - EPISODE 037
28 min
305
Anna Laurent on Alagille Syndrome and Her Road ...
ONCE UPON A GENE - EPISODE 036
38 min
306
Sage Graves - Estate Planning, Guardianship, Sp...
ONCE UPON A GENE - EPISODE 035
38 min
307
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
308
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
309
In Loving Memory of Lucas DeFabio
4 min
310
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
311
Quarantine - What We're Missing, What We're Not...
31 min
312
Trust Your Instincts; An Early Intervention Can...
37 min
313
Put Your Own Oxygen Mask On First
30 min
314
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
315
Therapy Check-In With Rose Reif
38 min
316
How Our Rare Kids Can Shape Us
34 min
317
A Grandfather's Story of Guardianship, Caregivi...
42 min
318
Choosing Hope
33 min
319
Mental Health and Coping During Covid-19
38 min
320
School Closures and FAPE
28 min
321
A Healthier Healthcare For All
40 min
322
Morgan's Wonderland
27 min
323
Neena Nizar and the Jansen's Foundation
37 min
324
Distressed Genes Aren't Just A Fashion Statement
41 min
325
The Value of Genetic Counselors
45 min