Extra To Love: A Trisomy Podcast

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 peopl...

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 experie...

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...

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...

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...

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...

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 E...

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 Ext...

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...

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 effec...

Jeanna Polacek, mom to 5 year old Mia who has full Trisomy 18 and co founder of Edwards’ Syndrome Association joins Extra To Love: A Trisomy Podcast to discuss their surprising birth diagnosis, the milestones Mia has reached, the relationship Mia has with her baby sister, as well as the heart and mission of Edwards’ Syndrome Association. We also discuss the intentionality behind choosing to use ‘E...

This week Julie discusses nurturing a spirit of gratitude and choosing to see God's hand in the midst of difficulties. If you are struggling to feel gratitude, let your challenge this week to be acknowledging your blessings. When you notice the good things in your life, even something like air conditioning in the summer heat, write it down or say thank you to God.  Extra To Love is a non-prof...

Home Health Nurse of 15 years and medical mom Tomi Moe joins Extra To Love: A Trisomy Podcast to share her perspective on how to identify and keep great nurses, realistic expectations for parents and more. Her experience being in many home as a nurse and also having nursing in her home for her child gives her unique and valuable insight to share. We know this is a subject that affects many familie...

In this Ministry Moment, Julie considers Joseph's role in our saviors life, and how we can glean the importance of an earthly father from what we know about him. Like Joseph, man trisomy fathers are thrown into situations they never could have predicted. Faith in God empowered Joseph to not only accept the situation, but to be the husband Mary needed, and the earthly father Jesus needed. Happ...

Kelly, mom of 5 year old Kora, who has Trisomy 13 (Patau Syndrome) joins us to share their story of ups and downs, and the beautiful life that Kora now leads as a big sister and almost-first-grader.  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 effec...

In this week's Ministry Moment, Julie encourages listeners to remember that we are doing the Lord's work every day, and reminds listeners to consider Colossians 3:23-24 - in whatever you do, work as if you are working for the Lord. Caring for a child with disabilities such as those associated with Trisomy 13 and Trisomy 18 can be taxing and can lead to going through the motions to move f...

On this episode of Extra To Love: A Trisomy Podcast , we're talking to Jennifer Springer, Director of Operations for ETL. Jennifer is connected to the trisomy community through her granddaughter, Sage, who had trisomy 18. Jennifer talks about the choice to be the "village" that is needed to raise a child with disabilities, her love for the trisomy community and her passion for her r...

Julie Hawkins, Extra To Love Board Member and a Director of Children's and Family Ministry, begins a new feature on the ETL Podcast, Ministry Moments. It is our hope that each Ministry Moment provides the uplifting  encouragement you need to continue seeking God's face through uncertainty.  Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 1...

Lacey Ponder, mom of Eloise who lived 14 months and had Trisomy 18, discusses the shock of their birth diagnosis, the decision to focus on speaking life over her daughter, and how she finds comfort in the truths of the gospel as a bereaved mother.  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. Throug...

Families are often told to consider the burden their child with special needs will have on their neurotypical children. What better way to remove the stigma than to allow the opportunity for their siblings to speak on their experience!  Five children ranging in ages 13 to 17 joined the Extra to Love podcast to discuss their prospective of having a sibling with Trisomy 18 and Trisomy 13. The teens...

Audrey Mercier gives a glimpse into the life she has with her daughter, Cecilia "Cece" who has Partial Trisomy 13. She was vulnerable with her heart and journey.  She has just completed her first year of medical parenthood and is doing an incredible job!  You can find her on facebook and instagram @reslilientmama_co. Extra To Love is a non-profit organization that aims to improve the liv...

Emma, Jenn and Amber announce some exciting changes and goals for 2024 with services offer from Extra to Love.  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 st...

Charity joins Emma and Amber on this episode to talk about the way she juggles her many hats and accomplishments. Charity has a heart to serve and give Maggie a life well lived and loved! The diagnosis her daughter has wasn't the end, but a beautiful revelation of things that really matter in life!  Extra To Love is a non-profit organization that aims to improve the lives of people with Triso...

Jenn, Emma, and Amber discuss the events and emotions leading up to the very emotional first birthday of their children with Trisomy. We are often told the chances of even getting one is slim to none, as the first has come to pass, they discuss what it feels like as each birthday for their child comes back around.  Asher is a little boy who will be 5 soon, Sage just turned 3 and Evalyn is about to...

The name "Journey" is the perfect name for a little girl who is described by her Mom as an answered prayer and a true blessing in her life! Listen in as her Mom, Deirdra tells the story of her birth, diagnosis, and the advocacy that has followed. Journey is a four year old girl who is quite the fashionista, and has a beautiful relationship with her sibling! Journey is pure sunshine and n...