Extra To Love: A Trisomy Podcast

Hosted by extratolove.org

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Latest episode

Sep 2024

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EN-US

About the show

A podcast for people who have been impacted by the diagnosis of Trisomy 13 or Trisomy 18. Educational, informational and personal experiences with these diagnoses to provide comfort, community and empowerment to those that listen. Visit extratolove.org to learn more about our non-profit organization.

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33 recent

September 28, 2024Episode 21454 min

Ep 214: Anna, The Birthday Girl! (Trisomy 13)

Published on Anna's 5th birthday, this episode features Megan DeRuiter, mom to Anna who has Trisomy 13. She discusses the confusion of Anna being given a poor prognosis despite presenting well, the impact of her healthcare background on her early journey and what she has learned about the Trisomy 13 community. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

September 13, 2024Episode 21340 min

Ep 213: An Honest Marriage Chat with Matt and Jenn (Trisomy 18 Parents)

In this episode of Extra To Love: A Trisomy Podcast, host, Jenn, and her husband, Matt, reflect on the impact of parenting a child with Trisomy 18 on their marriage over the past 6 years. They share their personal experience, lessons they've learned, ways they are still trying to grow and more. They also share the unique experience of navigating a trisomy diagnosis when one parent has experienced medical complexity and loss before with a child. Whether you are also navigating marriage while parenting a child with a trisomy diagnosis, or you are just embarking on this journey, there is so much community and wisdom to be found in this episode. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

September 8, 20247 min

Ministry Moment: Faith Is A Command!

Are belief and faith the same thing? Listen as Julie compares the two, and discusses that God not only wants us to have faith, but commands it! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

August 30, 2024Episode 2121 hr 12 min

Ep 212: Journey For Jazz (Trisomy 18)

Chelsi, mom of 5 year old Jazz who has Trisomy 18 (Edwards Syndrome), joins Extra To Love: A Trisomy Podcast to share her wisdom and perspectives on how Jazz's life has impacted their family, if this journey is worth it, the importance of connecting with the trisomy community and more. You definitely don't want to miss this episode! Follow Jazz's journey and connect with Chelsi on instagram @journey4jazz and Facebook: Chelsi Crawford Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

August 18, 202450 min

Ep 211: All About Communication with Audrey and Olivia! (ST)

We are joined by Audrey Brock (M.S. CCC-SLP) and Olivia Lane (M.S. CCC-SLP) join us to share all about speech therapy, communication using AAC, and more. Although most people with Trisomy 18 or Trisomy 13 are non-speaking, that does not mean they are non-communicating. Communication can look many different ways, and speech therapists have a wonderful arsenal of tools to assist with that! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

August 11, 20245 min

Ministry Moment: Blessed Is The One Who Perseveres

In this Ministry Moment, Julie shares on resilience and the call to persevere through trials. With an encouraging call to reframe our thinking, let this Ministry Moment give you a new wind to continue to be resilient through the obstacles you are facing. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

August 2, 2024Episode 21034 min

Ep 210: Evie, Held For a While, Loved For a Lifetime (Trisomy 13)

At Extra To Love, we are firm believers that a child's value is not based on the number of their days here on Earth. Evie, who had Trisomy 13 and lived 56 days, had an impactful, love-filled life. Evie's mom, Emily, shares about how their journey changed her, how she includes Evie in her baby sister's life, and her favorite memories shared with her daughter. Join us in remembering Evie and appreciating the special impact her life had. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

July 28, 20246 min

Ministry Moment: God is Our Strength

In this Ministry Moment, Julie provides the ever-empowering reminder - If God is for us, who can be against us? In God we are strengthened and equipped to face each challenge, with Jesus - the source of our strength - walking right beside us. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

July 20, 2024Episode 20959 min

Ep 209: Physical Therapy is Awesome! With DPTs Kaitlyn and Rianna

Our guests this week hold special meaning to ETL, as they have been the physical therapy providers for the kids of our ETL team members and have been cheerleaders for them every step of the way. In this episode, Rianna Silverstein, DPT and Kaitlyn Evers, DPT share their perspectives on their experience treating children with trisomy 18, discuss what to look for in a PT, explain the purpose of DMI, and speak to the power of intensive therapy. We hope you will feel encouraged by hearing the way these two amazing therapists champion the trisomy community and the abilities of children with a trisomy diagnosis. Disclaimer: The thoughts and opinions shared in this episode are personal perspectives and experience and are NOT meant to replace the guidance of your child's licensed healthcare and therapy providers. Please consult with your child's therapists and doctors for care specific to their needs. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast

July 14, 20245 min

Ministry Moment: Created For Community

In this Ministry Moment, Julie encourages listeners to lean into community with the reminder that scripture repeatedly demonstrates the power of joining with others, especially in challenging times. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected, supported and educated by hearing personal stories from parents and healthcare providers. To receive support or learn more about our mission, visit www.extratolove.org Follow us on socials!https://www.facebook.com/extratolovehttps://www.instagram.com/extratolovehttps://www.instagram.com/extratolovepodcast