99 episodes

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.

Once Upon A Gene Effie Parks

    • Society & Culture
    • 5.0 • 137 Ratings

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.

    Rare Disease Adoption with Josh and Monica Poynter

    Rare Disease Adoption with Josh and Monica Poynter

    ONCE UPON A GENE - EPISODE 081
    Rare Disease Adoption with Josh and Monica Poynter
    Josh and Monica Poynter have a son named Tag with severe Hemophilia Type A, a rare genetic disease which makes him vulnerable to prolonged bleeding. Despite this, these rare parents knew they wanted to grow their family. They were unable to have another biological child and welcomed their adopted son Trey into their family. Trey shares the same genetic disease as Tag. He was abandoned at 2 years old and spent 7 years living in an orphanage in China. Trey is now in his forever home with his forever family and Josh and Monica share their heartwarming family and adoption journey story with us. 

    EPISODE HIGHLIGHTS
    What type of Hemophilia do Tag and Trey have and how are they affected by it?
    They both have Hemophilia Type A and are missing the factor VIII clotting protein. If they're not receiving medication to prevent bleeding, they bleed easily and bleed longer. Without a preventative regiment, bleeding can be life threatening. 
    What empowered you to adopt another child with the same rare disease?
    Once Tag started a preventative regiment and wasn't bleeding, it became routine and we became more comfortable. At this point, I think it would be more difficult to have a child without Hemophilia. 
    What obstacles did you face with adoption?
    We knew our family wasn't done growing. When we started the adoption process, we found Trey, read his story and saw a video of him trying to walk with an active bleed in his knee. He had the biggest smile on his face and we were all-in. There was a sense of urgency that we had to hurry. Our family was behind us to support us and help us fund raise, watching Tag while we traveled and interviewed. 
    What would you tell other families considering adoption of a rare disease child?
    You can give a child with a rare disease a completely different life and a different perspective on how to live their life. It is life changing for the child, but even more so for you as a parent. It's a challenge, it's work, it's stressful-- but it's worth it in the reward of blessings you experience. We started with no knowledge. If it's something you're considering, take the first step in faith. Help is available and you’ll get through it, but you have to take the first step.

    LINKS & RESOURCES MENTIONED
    Hand in Hand International Adoptions
    https://www.hihiadopt.org/
    Kentucky Hemophilia Foundation
    https://www.kyhemo.org/
    EPISODE 078 - Media with a Mission with Believe Limited CEO Patrick James Lynch
    https://effieparks.com/podcast/episode-078-media-with-a-mission-with-believe-limited-ceo-patrick-james-lynch

    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/
     
     

    • 27 min
    Effisode - Empathy Puts Some Pep in Your Step

    Effisode - Empathy Puts Some Pep in Your Step

    Intro music by Scott Holmes

    • 7 min
    Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine

    Rare Disease and Grief - Its Ok That You're Not Ok with Megan Devine

    ONCE UPON A GENE - EPISODE 080
    Rare Disease and Grief - It’s OK That You’re Not OK with Megan Devine
    Megan Devine is the author of It's OK That You're Not OK, a psychotherapist, a grief advocate and communication expert dedicated to helping people face their toughest experiences. This book, her story and explanation of grief changed everything for me. After this episode, be sure to get a copy of the book for yourself, join her community and check out her new illustrated journal, How to Carry What Can't Be Fixed.
    EPISODE HIGHLIGHTS
    Can you share the background on how your book came about?
    I've been a psychotherapist for about 18 years working with trauma, but when my partner died in an accident, my perspective on loss changed. I saw that the way we talk about grief in culture is flawed. When my partner died, I closed my practice. I began speaking about grief publicly, training and writing books to do what I could to help grieving people feel more heard and supported. Today, I'm a psychotherapist, author and grief advocate and I talk about the ways we get grief wrong and what to do better for us and for others. 
    What are the biggest misconceptions about grief?
    Grief usually belongs to death, but grief is a spectrum and you get to claim grief for yourself. Just because other people may have it worse doesn't mean you can't grieve. You don't have to demote your grief based on other people having more of a right to be grieving. All grief is valid, but that doesn't mean that all grief is the same. If we can be curious about the different ways we grieve, it's a way for us to come together to talk about it and meet each person's loss and grief with curiosity instead of trying to fit it into a one-size-fits-all package. 
    What do you mean by "some things can't be fixed and they must be carried"?
    We live in a problem-solution culture. Not everything has a solution and not everything works out for the best. It's not our job as humans to rise above everything. It's not realistic.
    Tell me about the movement you've created for people to acknowledge their grief.
    When we tell the truth about grief and let people tell their truth about their own experience, they get to just be in pain. If you think about grieving, you often find that you have to defend your grief and experience. That need to defend your experience causes annoyance and suffering because you're expending energy on defending your right to feel how you feel instead of feeling supported. Refuge In Grief is online, on Instagram, Facebook and Twitter. Refuge In Grief is the grievers community. We have to start normalizing grief and talking about what it's really like and what power there is in healthy grief. There's also a Writing Your Grief course that has awesome writing prompts, but mostly a magical community that forms during the live sessions. We open new sessions about every five weeks.
    How can we show up for someone who is grieving and support them?
    Interrupt your impulse to fix. It's human to find it difficult to watch someone you care about in pain and not try to make it better. Recognize your impulse to make it better and think about what you can do that would feel supportive in the moment. Don't assume you know what someone needs, don't jump in with solutions, but instead acknowledge and offer what you can offer and ask if your offering is helpful.

    LINKS & RESOURCES MENTIONED
    It's OK That You're Not OK
    https://www.amazon.com/gp/product/B073XXYKLP/ref=dbs_a_def_rwt_bibl_vppi_i0
    How to Carry What Can't Be Fixed
    https://www.amazon.com/gp/product/1683643704/ref=dbs_a_def_rwt_bibl_vppi_i3
    Writing Your Grief
    https://refugeingrief.com/writing-your-grief/
    Speaking Grief Documentary
    https://speakinggrief.org/
    Refuge in Grief
    https://refugeingrief.com/
    Refuge In Grief on Instagram
    https://www.instagram.com/refugeingrief/
    Refuge In Grief on Facebook
    https://www.facebook.com/ref

    • 1 hr 2 min
    Creating Space for Mental Health for Men Living with Rare Diseases with David Ross

    Creating Space for Mental Health for Men Living with Rare Diseases with David Ross

    David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017 when he was diagnosed with a rare disease called Cowden syndrome. He became dedicated to raising awareness and helping to support others impacted by Cowden syndrome.
    EPISODE HIGHLIGHTS
    When were you introduced to the rare disease world?
    I was diagnosed with my rare disease, Cowden syndrome, about three and a half years ago and it's been a roller coaster journey learning about my condition, managing my health and the impact on my family life
    How did your diagnosis impact your family life?
    It started with a letter from my mother that she had been diagnosed with the same condition about a year before she passed away. The letter was for me to provide to my primary doctor with information for getting tested. At the time, I didn't know what to do with the letter and I was too busy living my life and too scared to deal with the possible consequences of the letter because I could see the impact it had on my mother's health. After she passed away, I decided to get tested and was found to have the same condition. The genetics counselor talked me through the process for getting tested and we talked about my daughter also needing to be tested. It was a difficult decision to put her through that at age 11. She was found to not be a carrier of the condition, which was a relief. Then I faced what to do, how my condition would impact me, my wife and daughter. 
    How did you get started on your mental health and advocacy journey after your diagnosis?
    I moved quickly because I needed to know more about my condition and connect with other patients. That quickly turned into supporting others. It was too late for my mother, but I wanted to do what I could for others and offer support where I could around their health. I was involved in a clinical trial at Boston Children's Hospital, and the opportunity made me feel like I was making a difference and helped my family connect with other families. 
    How do you feel like you're making a difference in the rare disease community? 
    I've looked for opportunities that I can do from home, setting up international Zoom calls for male patients and caregivers because there are a lot of fantastic female advocates, but there don't seem to be as many male advocates, parents or patients talking about rare disease and how it impacts their mental health. It's been good to do that and learn from other guys speaking about their health and speak about what I'm going through. 
    What support have you found to be helpful along the way?
    After my mother passed away, I went to a bereavement support group and it was full of older people and mostly women. It felt like there was no connection with the people in the group, but it was a learning curve because I gained a lot talking to people about their losses. It made me feel lucky for my loss compared to others and helped me to look at the positive. There have also been supportive rare disease friends who get what I'm saying and offer knowledge and guidance. 
    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/
     

    • 27 min
    Effisode - Adventures in the Grocery Store

    Effisode - Adventures in the Grocery Store

    Intro music by Scott Holmes

    • 10 min
    Media with a Mission with Believe Limited CEO Patrick James Lynch

    Media with a Mission with Believe Limited CEO Patrick James Lynch

    Media with a Mission with Believe Limited CEO Patrick James Lynch
    Patrick James Lynch has to inject himself with medication every other day because his liver doesn't produce a protein that helps his blood vessels seal when they burst. He and his brother were both born with hemophilia and he's since lost his brother to the disorder. After his loss, he felt compelled to reach others to provide support and awareness about the importance of life-sustaining medicine. Patrick is the founder and CEO of Believe Limited, he hosts camps, produces web series, creates workbooks and workshops, hosts the BloodStream podcast and has produced a film called Bombardier Blood.

    LINKS AND RESOURCES MENTIONED


    Believe Limited https://www.believeltd.com/



    BloodStream Podcast https://podcasts.apple.com/us/podcast/bloodstream/id1133574474?mt=2



    Bombardier Blood https://www.bombardierblood.com/



    My Beautiful Stutter https://www.mybeautifulstutter.com/



    Stop The Bleeding! https://www.youtube.com/watch?v=UCfGfh6Pax0



    The Birth Story: Welcome Vivian Bea‪!‬ https://podcasts.apple.com/us/podcast/the-birth-story-welcome-vivian-bea/id1133574474?i=1000513633326



    TUNE INTO THE ONCE UPON A GENE PODCAST


    Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7



    Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347



    Stitcher https://www.stitcher.com/podcast/once-upon-a-gene



    Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene



    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/

    • 40 min

Customer Reviews

5.0 out of 5
137 Ratings

137 Ratings

glennhammer ,

Simply fantastic

Effie’s podcast has become a lifeline. She’s amazing, honest, relatable, funny (when needed) and all around awesome. It’s amazing to find another mama who is here to support those like me on this rare journey. Her Effisodes are so insightful, her guests are amazing. I’ve learned a lot! Love this and cannot recommended enough.

MarlanaK ,

Effie’s Pod is Amazing!

Even though I don’t have a kiddo myself, I’ve referred it to three loved ones who told me they felt less isolated after listening. More content, please!

MoiraCleary ,

Always brightens my day

I love Effie and how she rolls! There is a spark to her and her show that makes my day better than it was before. Yes even on her tough ones! I can’t wait for the day we meet in person!

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