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Go Shout Love Podcast

Go Shout Love Podcast

Author: Go Shout Love

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Go Shout Love tells the stories of amazing kids on rare medical journeys and sells creative apparel inspired by the kids to benefit their families. In the GSL podcast, we interview the parents of these amazing kids and offer other conversations designed to inspire and encourage anyone who listens.
78 Episodes
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78 - Meet Ivy - Part 2

78 - Meet Ivy - Part 2

2021-02-0924:13

Welcome back shouters today we are continuing our talk with Byron and Kari the parents to little feisty ivy, our feature kiddo for February 2021. She has diastrophic dysplasia and that comes with its set of challenges that are unique, especially when the best doctors to help are cross the country. This is part 2 of this conversation, if you have not listened to part 1, press pause and go back and do that. Part 1 has a lot of context about ivy, her family and her diagnosis that will help set the stage for this episode which has a lot of good pieces to take away. Connect with Kari and Byronhttps://www.instagram.com/little_ivy_sunshine/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
77 - Meet Ivy - Part 1

77 - Meet Ivy - Part 1

2021-02-0241:31

This is part 1 of two conversations with Kari and Byron, the parents to two-year old feisty and determined Ivy who has Diastrophic Dysplasia.This episode centers around the little Ivy’s medical journey as well as her journey of being adopted into her wonderful family. Join us in shouting love for Ivy for the month of February.Please follow us on Facebook and on instagram, just search Go Shout Love…you will find us and you will also find more connection to these families as well as previous families. Basically you will find and be welcomed into our community. Stay tuned as more families will be featured and more opportunities for all of us to go shout love. Connect with Kari and Byronhttps://www.instagram.com/little_ivy_sunshine/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This episode is part 2 of a conversation with Daidra and Eric who are the parents to this month’s feature kiddos…wonderful boys Eli and Zeke. They also have another son Isaac and you can hear all about these boys in part 1. I would recommend listening to that first if you haven’t just for a little context coming into this episode. In part one we heard about Eli and Zeke’s diagnosis and some of the challenges that surround that. This episode takes a step back and looks at the broader picture of perspective and labels and dives into being a resource for families who are on similar journeys our at least for families who feel alone. Connect with Daidra and Erichttps://www.instagram.com/daidrahamlin/https://www.facebook.com/daidra.hamlin.5Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Today we have with us Daidra and Eric who have three boys, two of which are 11 year old twins and one is a not even a year old yet. Two of these three boys are our feature kiddos for January. One incredible feature about their story is the relationship between each of the boys with one another. Eli has Cerebral palsy and is also one of the twin brothers. Isaac is the other twin and doesn’t carry a diagnosis. Fast forward a number of years and along comes baby zeke who has been diagnosed with Pontocerebellar Hypoplasia along with other complications. This is part one of two conversations about Eli and Zeke and this wonderful family. We touch on many topics including each boys diagnosis, challenges they face especially through COVID and some life lessons as well.Connect with Daidra and Erichttps://www.instagram.com/daidrahamlin/https://www.facebook.com/daidra.hamlin.5Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
It is the end of 2020. Josh and Seth talk about how Go Shout Love weathered the pandemic and how we were still able to impact families. There is also some exciting news about the future of Go Shout Love and a new program as well.
Today we are with Andrew and Sam, the parents to Maddox and Paisley, the kiddos we are featuring for the month of November. This is part 2 of this conversation and if you have not listened to part 1, I would recommend pausing this and listening to that for context and to get to know the family as well. This episode expands on the two very different diagnoses for these siblings along with other topics including…how as parents, as couples and as families they attempt to handle the “unknowns” that come with a rare diagnosis and everything involved with it….much less during a pandemic. We talk about public perception and how to navigate comments, looks and stares, and overall inclusion that comes with humanity. Connect with Andrew and Samhttps://www.instagram.com/sduran626/https://www.facebook.com/samantha.danielle.752Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Today’s conversation is with Andrew and Sam, the parents to Maddox who is 2 years old and Paisley who is 7, are our feature kiddos for November. They also have 4 year old Juliet, which means they have a lot on their hands with some amazing kids and their personalities. Maddox is diagnosed with Spina Bifida, hydrocephalus along with a few other conditions. Paisley is diagnosed with Cerebral AVM (arteriovenous malformation) in the basal ganglia region of her brain. This family has an incredible journey to share. This is Part 1 of 2. Connect with Andrew and Samhttps://www.instagram.com/sduran626/https://www.facebook.com/samantha.danielle.752Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This is the second of two episodes with Robyn and Glen, the parents to Luna who is our featured kiddo for the month of October. If you haven’t listened to the first one I would recommend it before jumping into this one. To provide context, Robyn and Glen have been fighting and advocating for their daughter since shortly after she was born. There have been many hectic moments and many stressful and frustrating conversations that have left them feeling stranded with very few answers on how to help Luna with her pain, much less her diagnosis and her future. Connect with Robyn and Glennhttps://www.instagram.com/the_empathic_nutritionist/https://www.facebook.com/robyn.grogitskyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
It is a new month and that means a new family to feature. Today we are talking with Robyn and Glen the parents to precious and magical Luna from Las Vegas, Nevada. I am going to let Robyn and Glen tell you about her diagnosis and even how to pronounce it. I have tried and still haven’t succeeded. They are the ones who are educated. Which is actually a theme of this weeks episode. Not how to pronounce these diagnoses, but learning and working knowledge of them and how to advocate for your child and beyond. Connect with Robyn and Glennhttps://www.instagram.com/the_empathic_nutritionist/https://www.facebook.com/robyn.grogitskyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Today we get to hear some advice from these parents who have kept going even in the storm. But not only that, we get to hear about how they have gone beyond their initial anger and grief and have turned their journey outward and have begun a foundation called lightening and love to help with the research of other future diagnoses similar to Emmy and abby’s. Connect with Mark and Mariahwww.lightningandlove.orghttps://www.instagram.com/lightningandlove/https://twitter.com/mariahgillaspieConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Today we have with us Mark and Mariah the parents to Emma and Abby from Centennial, Colorado. These sweet sisters not only share a powerful sibling bond, but also share an ultra-rare undiagnosed genetic mutation that is so rare that they are the first two cases in the world. This mutation leads to infantile Spasms, Epilepsy, Lennox-Gastaut Syndrome and more. They share with us their very unique medical journey as well as the impact their close community has had on them. This is Part 1 of 2. Connect with Mark and Mariahwww.lightningandlove.orghttps://www.instagram.com/lightningandlove/https://twitter.com/mariahgillaspieConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This is part 2 of our conversation with Matt and Liz the parents to Teddy who has Dup15q. Teddy has a personality that is contagious and leaves in imprint on everyone he is around. Matt and Liz give us a glimpse into their growth and life lessons with Teddy as their joyful son. Liz also talks about the importance of advocacy and how that can carry you as a caregiver to your kiddos. Connect with Matt and Lizhttps://www.facebook.com/elizabeth.bronson.1https://www.instagram.com/elizabethnicole88/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Today’s interview involves a medical journey with many twists and turns leading to where they are at now. We are taking to Matt and liz who are the parents to Teddy who has Duplication on 15q chromosome or better known as Dup15q. You will hear an incredible story from two incredible parents with personalities that you will easily get attached to. One aspect of their story that is valuable to someone who may be going through something similar, is how they noticed and reacted to Teddy’s missed milestones. Connect with Matt and Lizhttps://www.facebook.com/elizabeth.bronson.1https://www.instagram.com/elizabethnicole88/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
65 - Meet Sydney

65 - Meet Sydney

2020-08-0443:15

Today’s conversation is with Samantha and Addison, the parents to 3 year old Sydney from Ceresco, NE who has been diagnosed with Infantile Neuraxonal Dystrophy; a very rare genetic disease that only affects 300-500 people worldwide. Sydney has a profound impact on anyone she comes in contact with and leaves an imprint on peoples hearts. This episode lets us in on who Sydney is and her complicated medical journey. Connect with Addison and Samanthahttps://www.facebook.com/groups/sydthekid/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This is Part 2 of the conversation with Craig and Denise, the parents to Fletcher who is an amazing kid from Oklahoma City, Oklahoma. Fletcher has Epidermal Nevus Syndrome. Today we talk about acceptance and kindness. Two words that express everything fletcher gives out, but not always what is received. The social media experience for quite a few of our families is full of support and love and community. Sadly this isn’t always the case as Craig and Denise discovered by simply posting about Fletcher achieving a milestone.Connect with Craig and Denisehttps://www.instagram.com/Mommyburns/https://www.facebook.com/denise.milgrimburns/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Our conversation today is with Craig and Denise the parents to Fletcher. Fletcher is a funny and kind 15-year-old living in Oklahoma who has Epidermal Nevus Syndrome. He is a true people-person and loves talking to anyone and everyone. This is part 1 of 2 conversations with Craig and Denise as they share with us their challenges with Fletchers medical journey and their life adjustments. Connect with Craig and Denisehttps://www.instagram.com/Mommyburns/https://www.facebook.com/denise.milgrimburns/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Colton and Katie, the parents to Shiloh who is the feature kiddo for June 2020, continue sharing with us about their journey into the diagnosis of Cri Du Chat syndrome for Shiloh. They tell us about how life has changed since the official diagnosis. There obviously has been adjustments, both logistically as well as relationally and emotionally. Colton and Katie graciously share their hearts and what they have learned in the past year.Connect with Colton and Katiehttps://www.instagram.com/colton.christofferson/https://www.instagram.com/katiechristofferson_/https://www.facebook.com/katie.christofferson.12https://www.facebook.com/colton.christofferson.92Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Josh talks with Colton and Katie, the parents to Shiloh who is the feature kiddo for June 2020. Shiloh is the sweetest 11 month old girl who has Cri Du Chat Syndrome. Colten and Katie talk about the early days of their journey from tests during pregnancy reading that things were normal, to further tests that suggest something else. They talk about their time in the NICU and describe the setting of the uncertainty and confusion of waiting for answers after delivery. Connect with Colton and Katiehttps://www.instagram.com/colton.christofferson/https://www.instagram.com/katiechristofferson_/https://www.facebook.com/katie.christofferson.12https://www.facebook.com/colton.christofferson.92Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Josh talks with Cassie, the mother to Jack who was one of four feature kiddos in October of 2019. Jack has a rare medical diagnosis called Lissencephaly Miller-Dieker's Syndrome. Cassie opens up and shares about the extreme ups and downs of life with Jack’s diagnosis, especially during a time when the world is dealing with COVID. Connect with Cassiehttps://www.instagram.com/jcgrass/https://www.facebook.com/TheJackOfOurHearts/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Josh interviews Tameka, the amazing mother of Evely who was our feature kiddo in September of 2019. Evely has a rare medical journey includes being born without eyes. Tameka gives us an update on her family and Evely’s medical journey. She also talks about dealing with COVID and surviving with a child on a rare medical journey and gives us great insight on what really matters in life. Connect with Tamekahttp://instagram.com/housegypsyhttps://www.facebook.com/ThroughEvelysEyes/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
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