Go Shout Love Podcast

This is part two of the conversation with bob and Lauren the parents to Leo who is our feature kiddo for the month of march. A lot of good content here that is applicable for anyone listening. Bob and Lauren are incredibly easy to listen to and have a lot of poignant things to say about their son and life in general. this episode talks a lot about inclusivity and society. we talk about how to supp...

Today we are talking with Bob and Lauren, the parents to Leo. Leo is a loving, sweet, and ornery five year old who lives on a ranch in Oklahoma with his family. He enjoys swimming, being outside and riding horses. Leo encourages us to look for the positive in each day and to enjoy the ride. Leo has been diagnosed with Aicardi-Goutieres Syndrome. This episode dives into his diagnosis and the journe...

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...

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 Lo...

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...

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...

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 top...

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 (ar...

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...

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 pronou...

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 Mariah www.lightni...

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 me...

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 Ma...

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 someo...

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...

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 com...

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 wi...

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 wh...

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...

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 Cassie https://www.instagram.com/jcgrass/ https://www.f...

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...

The conversation with Kevin and Jess continues in the second episode of this two part interview. They are the parents of Molly, our featured kiddo for May from Celina, Ohio. Molly is a beautiful and joyful two-year-old who is lovingly referred to as ornery. In part two of the conversation, Kevin and Jess open up and talk about their marriage, their relationships, and their community as they contin...

Josh chats with Kevin and Jess, the parents of Molly, our featured kiddo for May from Celina, Ohio. Molly is a beautiful and joyful two-year-old who is lovingly referred to as ornery. In part one of the conversation, Kevin and Jess introduce us to Molly's personality, share openly about the difficulties of the unexpected complications at Molly's birth, and the rollercoaster months that would follo...

At 20 years-old, Marcela survived a fatal car accident. New to the United States and knowing very little English, her life took a tragic turn that night as she lost her boyfriend in the car accident as well as her ability to function physically as she always had. Today she leverages the power of social media to document what traveling looks like for people with disabilities and highlights opportun...