Once Upon A Gene
317 episodes - English - Latest episode: about 1 month ago - ★★★★★ - 258 ratingsAs 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.
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Episodes
Films and Fatherhood
January 30, 2020 12:00 - 38 minutesONCE UPON A GENE - EPISODE 015 Films and Fatherhood Daniel DeFabio is joining us today to share his experience and perspective as a father of a son with a rare disease called Menkes. Daniel is a contributing author to The Mighty and the Co-Founder of the Rare Disease Film Festival. EPISODE HIGHLIGHTS Tell us about your son Lucas. The good news is that he has just turned eleven years old. He was diagnosed with Menkes at age one and we've been dealing with this rare disease journey for ten yea...
Episode 015 - Films and Fatherhood
January 30, 2020 12:00 - 38 minutes - 35.8 MBONCE UPON A GENE - EPISODE 015 Films and Fatherhood Daniel DeFabio is joining us today to share his experience and perspective as a father of a son with a rare disease called Menkes. Daniel is a contributing author to The Mighty and the Co-Founder of the Rare Disease Film Festival. EPISODE HIGHLIGHTS Tell us about your son Lucas. The good news is that he has just turned eleven years old. He was diagnosed with Menkes at age one and we've been dealing with this rare disease journey ...
A Fellow CTNNB1 Mama
January 23, 2020 12:00 - 24 minutesONCE UPON A GENE - EPISODE 014 A Fellow CTNNB1 Mama Tara Bryant is a special warrior mom who has a young son with CTNNB1 and she's sharing her heartfelt story with us. I connect with her as a mom, going through the same things with CTNNB1, we're both hair stylists and I love the real stuff she shares- stuff we're all living through and not necessarily talking about all the time. LINKS AND RESOURCES MENTIONED Parent’s Facebook Group Proloquo2Go TUNE INTO THE ONCE UPON A GENE PODCAST Spotify ...
Sibling Support
January 16, 2020 12:00 - 35 minutesONCE UPON A GENE - EPISODE 013 Sibling Support On the topic of siblings again this week, we'll be talking about the sibling perspective and the support available with Emily Holl, the Director of the Sibling Support Project. Emily is a social worker, writer, trainer, and sibling. Over the past 16 years, she has provided workshops, training, and groups for siblings, families, and individuals with disabilities. She has presented and written extensively on sibling issues, has conducted and publis...
My Favorite Pair of Genes
January 09, 2020 12:00 - 9 minutesONCE UPON A GENE - EPISODE 012 My Favorite Pair of Genes As my daughter Esme's first birthday is approaching, it's bringing up a lot of feelings. This is an episode of deep thoughts with Effie. EPISODE HIGHLIGHTS I've wanted to be a mother my entire life. I was blessed with an exceptionally nourishing mom and I had 12 siblings. Naturally, I wanted to have a bunch of kids myself and I wanted to give my kids siblings that would be by their side no matter what. When I met the man of my dreams, ...
Rollin' With Spina Bifida
January 02, 2020 12:00 - 40 minutesONCE UPON A GENE - EPISODE 011 Rollin' With Spina Bifida Joining me today is Whitney Stohr, a master advocate for her son and others in the community. There's a lot to learn from her family and a lot of good information in our conversation. CONNECT WITH WHITNEY Whitney Stohr on Facebook: https://www.facebook.com/whitney.stohrhendrickson Malichi’s Journey on Instagram: @rollin.w.spinabifida Instagram: #spinabifida #redefiningspinabifida #hydrocephalus LINKS AND RESOURCES MENTIONED Children's ...
My Pfeiffer Pfamily
December 26, 2019 12:00 - 33 minutesONCE UPON A GENE - EPISODE 010 My Pfeiffer Pfamily Synthiea Kaldi was the first person I knew to call when I was told something was wrong with Ford. I admire her so much and would be lost without her humor and understanding. Finding someone like Synthiea, someone who lives with a lot of hard stuff but can also find the humor in it, is a really valuable resource for your mental health and general outlook. It's not easy being a parent, especially when your child has a complex medical need. Synt...
The Fathers Network
December 19, 2019 12:00 - 45 minutesONCE UPON A GENE - EPISODE 009 The Washington State Fathers Network Along my own journey, I've felt passionate about capturing the perspective of fathers, grandfathers and other male caregivers. As moms, we may have an easier time connecting with other moms at therapy, school and on social media. My husband, a father with a child with complex needs has had a different experience than I have. I want to ensure we're both taking care of ourselves individually. I'm constantly reading Facebook pos...
Heartism
December 12, 2019 12:00 - 48 minutesONCE UPON A GENE - EPISODE 008 Heartism of the Bitterroot My guest today is a pillar in her community, starting an inclusive community center called Heartism Community Center, offering kids of any ability free cooking classes, art classes, yoga classes and more. Jessica Fitzpatrick is the Founder and Director of Heartism Community Center and Bitterroot Arts for Autism, a Seattle non-profit serving special needs children and families. Her background is Therapeutics in Recreation and Psycholog...