Once Upon A Gene By cover art

Once Upon A Gene

By: Effie Parks
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  • Summary

  • 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.
    © 2019 - 2022 Effie Parks
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Episodes
  • Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska

    Bringing Balance Back to the Language of Disability from The Special Needs Mom Podcast with Kara Ryska
    Apr 25 2024
    Connect with Kara, host of The Special Needs Mom Podcast: Instagram: https://www.instagram.com/thespecialneedsmompodcast/ Website: https://www.kararyska.com/ Coaching Opportunities Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
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    52 mins
  • From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland

    From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland
    Apr 18 2024
    ONCE UPON A GENE - EPISODE 226 From Classrooms to Communities - Parents Visionary Journey in Education, Living, and Advocacy for Inclusion and Epilepsy Funding with Jillian and Scott Copeland Jillian and Scott Copeland are husband and wife, advocates and pioneers who have transformed their personal journey of having a child diagnosed with epilepsy. They have taken off on a quest to create supportive and inclusive environments for kids with disabilities and founded a school, an inclusive living community and the Epilepsies Action Network. They're a force also shaping the policy landscape. EPISODE HIGHLIGHTS Can you first tell us about yourselves and your family? Our journey started about 30 years ago and we've had four sons. Our third son, Nicol, is about to turn 25 years old and when he was 8 months old, he had a prolonged seizure for over two hours and it took us on a different parenting journey than we expected. Since then, we've raised our children together and explored opportunities and possibilities for Nicol, which took us down the path that brings us to today. Our journey with Nicol has given our family a lot of meaning and purpose and it's been an amazing journey. Given that genetic testing hasn't revealed answers for what has caused his epilepsy, how have you managed to navigate the uncertainty and maintained such positivity and strength? Nicol is the lead, the model and we follow his example. Nicol is a wonderful model and he shares a lot of love and joy. He will have a terrible seizure, have to be medicated, feel awful after and wake up the next day with joy. We've had to manage fear and worry, but we take on Nicol's "the sky's the limit" and "can-do" attitude. We don't have the power to control or change a lot, but we do have a choice in how we see it and how we live life. We're both controlling people, but we had to come to terms with what we couldn't control. We'll keep living to the fullest and sharing and feeling love the best we can. Can you tell us about The Diener School? When Nicol was six, he was attending a school that wasn't the best fit for him and we decided to start a school. We found great partners and professionals to help us and we started The Diener School in 2007. The school is a multi-sensory experiential approach with very talented educators, therapists and behavior specialists who work with the kids and with each other. There are elements of the connection of movement and learning, social thinking and other essential curricula and strategies needed for kids who don't learn traditionally and learn through the senses. What is Main Street all about? Main Street is a 70 unit building in Rockville, Maryland where 25% of the units are set aside for individuals with disabilities and 75% of the units are affordable, serving households at 60% or less of the area's median income. On the ground floor, there's a 10,000 square foot community space and it's an inclusive environment open to anybody through membership. It's a place for people to find their happy, to be a part of a community and feel like they belong. What is the Epilepsies Action Network? Epilepsies Action Network brings together a widespread community of epilepsies in one unified voice to lobby the federal government for funds for the epilepsies because it's an under-funded disease, and as a result, there haven't been a lot of treatment advances or breakthroughs. LINKS AND RESOURCES MENTIONED ONCE UPON A GENE - EPISODE 224 - The Complicated World of ICD10 Codes with CEO and Co-Founder of SLC6A1 Connect - Amber Freed https://effieparks.com/podcast/episode-224-the-complicated-world-of-icd10-codes-with-ceo-and-co-founder-of-slc6a1-connect-amber-freed Epilepsies Action Network https://www.epilepsiesactionnetwork.org/ Rare Epilepsy Network https://www.rareepilepsynetwork.org/ The Diener School https://thedienerschool.org/ Main Street https://mainstreetconnect.org/
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    45 mins
  • The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

    The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman
    Apr 11 2024
    ONCE UPON A GENE - EPISODE 225 The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman Noah Siedman was a big brother to Ben who had Sanfilippo Syndrome, a devastating disease that leads to childhood dementia and premature death. He joins me to talk about his sibling experience and dealing with grief. EPISODE HIGHLIGHTS As a sibling under potential pressure to not be a burden, do you still carry those feelings even after Ben's passing? It's hard as a sibling to see everything your parents are facing that's out of your control. As a sibling, there's a need to be on top of your own care and your own emotions. There were no casual complaints in my family growing up. It was either a disaster or business as usual. Filling in that middle space where you have a bad day and want to talk about it didn't exist. We've had to work on that as a family because that's not how we've functioned. What coping mechanisms help you to write and talk about your experience? I came to the realization that I was going to be emotionally vulnerable, which is uncomfortable. Knowing I would have to talk about my experience and brother, I had to accept it, put it out front, and get really good at talking about it comfortably. I got more comfortable talking about the progression of my brother's disease and my feelings around him, and I used it as a shield. What would you say to the young person who is living the same life you were living and what questions should people ask that person? The first thing that I would say, and maybe the best thing to ask that person, is about their roles. When do you feel like a sibling? When do you feel like a caregiver? When do you feel like you're an advocate? When do you feel like you are just you? I got stuck in trying to be a lot of those things at once, where the easiest role to ignore was being just me. But everything you push down morphs into something worse. Frustration turns into resentment, fear turns into trepidation, sadness becomes melancholy. What are the misconceptions people have about death? The biggest problem with grief is that no amount of experience is applicable. It defies the ability to be prepared for it or to use your past to help you cope. I don't think grief gets easier, I think you get better at it. Those that try to give advice to people that are grieving are hanging on to the idea that that time will heal. It's not that your grief goes away, it's that you get better at it. How has your relationship with your sister changed? Ben's death brought us closer and we do a good job of communicating despite handling things differently. There's no right or wrong way to navigate life with a sibling who has a genetic disorder, so we don't judge each other and we're honest with each other. As a parent, how do you help siblings to have a better experience? Abandon the idea that you owe siblings normalcy. My parents put a lot of effort into delivering normal childhood experiences. Instead, put that energy into helping your children articulate what they want. More important than chasing normal is helping siblings decide what's important to them and how to pursue it. LINKS & RESOURCES MENTIONED ONCE UPON A GENE - Episode 109 - A Rare Collection - What I Know For Sure with Noah Siedman, Grayson Skibington and Nash Hawkins https://effieparks.com/podcast/episode-109-what-i-know-for-sure CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/
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    47 mins
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Profile Image for Mariana P.

Unexpectedly fascinating, touching, and funny

If you are a parent, grandparent, sibling, or friend of someone with a rare genetic disease or disorder, your life was turned upside down when your little one received the diagnosis. Effie Parks is the mom of a little boy with an ultra-rare disorder, and she went through the roller coaster of emotions after he was diagnosed. At first she felt isolated and frightened. She began to look for a community who would understand what her family was going through. She found it in podcasts. After a year of listening to others, she realized she wanted to start her own. The result was Once Upon A Gene, and if you are in the rare disorder world - as a family member, therapist, doctor, researcher, or just someone who wants to understand better, this is the podcast for you. It is sometimes somber, as parents tell of their journeys, sometimes enlightening, as practitioners and parents offer resources, and sometimes very funny, as Effie draws out her guests to share some of their might-as-well-laugh moments with their rare kiddos. All in all, this is a podcast you don't want to miss about a topic we all should know more about.

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Comfort in a Podcast

Effie is a gift to rare disease parents. Listening to her and her guests have helped me to feel less alone and more inspired to continue my advocacy journey. Thank you, Effie!

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