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 ...
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 p...
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 th...
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 aim...
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 ...
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 ‘Edwards Syndrome’, following in the foot steps of the Down syndrome (trisomy 21) community. ...
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 effected families will be empowered, connected, supported and educated by hearing personal stori...
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 role within ETL. Jennifer shares wisdom for those who are close with a family expecting a child with a tris...
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. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connected,...
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 get vulnerable with an inside look into their experience, they share about their joys and s...
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 lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love:...
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 stories from parents and healthcare providers. To receive support or learn more about our mi...
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 Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we h...
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 be 2! Extra To Love is a non-profit organization that aims to improve the lives of people ...
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 nothing short of an incredible testimony of God's Love! Deirdra is the first member of ETL's Parent A...
Amber, Jenn, and Emma discuss their experience with "Hospice/Comfort Care" measures. One of us skipped over it, the other was not given a choice and the last of us chose it! In this episode we discuss our vastly different experiences and what lead us to make the decisions we did. We discuss the importance of titration of the FIO2 for your child. Disclaimer: "Amber here, in this episode we do discuss death, I want to put a quick disclaimer that my ease of using the word "dead" i...
Podcast Co-Host Jenn takes us through the journey of her own grief of loss and life with another medically complex child. Asher, is her four year old son who has Trisomy 18, the odds have been completely stacked against him from the beginning. Asher has done incredible and amazing things despite the statistics he was compared to! 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 Extr...
Charity Nelson tells the story of her pregnancy, birth and life with daughter Maggie who is 3 years old and has Trisomy 18 (Edwards Syndrome). With a trach and GJ tube and two fun siblings, Maggie's story demonstrates the way medical complexity and fullness of life can coexist. Charity shares how she has witnessed God in the details of Maggie's life and coming to terms with her diagnosis. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18...
Amber, Jenn and Emma sit down with Jenn’s close friend, Laura, to discuss how raising a child with trisomy has impacted their friendship. The ladies have an insightful conversation regarding how to discuss medical complexities with typical children and how to be a supportive friend to someone with a disabled child. 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 Tri...
In this episode Kathryn discusses the impact her daughter's Trisomy 18 diagnosis had on her as a NICU nurse and her family. Indiana's lasting impact on her family isn't determined by the length of her life! Kathryn discusses the complications she had and all the things that make her daughter the blessing that she is. 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 Tr...