Go Shout Love Podcast

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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.facebook.com/TheJackOfOurHearts/ Connect with Go Shout...

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 Tameka http://instagram.com/housegypsy https://www.facebook.com/ThroughEvelysEyes/ Connect...

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 continue to raise and care for their beautiful daughter. Molly is a fighter who constantly pushes...

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 follow as they looked for answers. Molly is a fighter who constantly pushes herself and her family...

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 opportunities for communities to become more accessible. Connect with...

In this week's episode, Josh interviews Dr. Gerald Nebeker, a social enterprise entrepreneur with an incredible resume of meaningful work. But at the top of his list of accomplishments he put his family, his wife Laurel and their eight terrific kids, the youngest of whom has Down Syndrome. In his professional experience and the personal experience of having a child with a disability, Dr. Nebeker recognized a gap that comes for parents when a diagnosis is received - a gap between the life...

Mindy Scheier was in the middle of a successful career in the fashion industry when the realities of her son’s rare medical journey exposed a challenge in clothing for people with different abilities. This moment launched Mindy in a completely different direction that would advocate for all people to have the confidence that comes with adaptive clothing. In 2014 she launched Runway of Dreams which is reshaping the fashion industry, including working with Tommy Hilfiger, Zappos Adaptive,...

Josh chats with Shane Burcaw and Hannah Aylward of the popular YouTube Channel, Squirmy and Grubs. Shane and Hannah use their platform to shift the narrative and dispel myths around interabled relationships by sharing openly and honestly about their life together. This conversation covers real feelings on the topic of receiving and giving care. They also discuss the work being done by Laughing at My Nightmare, a nonprofit organization started by Shane... A nonprofit organization that we are...

Quickly leaving the pool to get to the restroom only to have to wrestle a wet swimsuit for several minutes... If you're a parent with a child on a rare medical journey, you likely understand this scenario. In this episode, Josh chats with a mom who believed there had to be a better way. Nikki Green is the founder of Victory Adaptive Collection, a company offering fashionable and functional adaptive swimsuits. Listen in to learn more about the products and how the company got...