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Say hello to our friend Elijah!Elijah is a brave, intelligent and loving almost six-year-old from Santa Fe, New Mexico where he lives with his parents, Marissa and Stevan. Elijah loves learning, the ocean, and nature documentaries.Throughout the month of May we’ll be shouting love for Elijah and raising awareness about his journey with Lennox Gastaut Syndrome, Cortical Vision Impairment, and a genetic mutation on the CACNA1E gene.
Today we are talking Lindsey and Jordan who are the parents to little Jack. They graciously invite us into not only their home but their medical journey with jacks diagnosis which comes with a collection of complications that you will hear about along with what life is like with Jack who will be turning 3 years old this month as we shout love for him and his family. He is a calm, sweet and persistent kid who is crushing it! Visit our website at goshout.love to support Jack through the purchase of a t-shirt, hat, sweater, hoodie, tumbler, or other items. Every purchase in April will be used to help cover the costs of Intensive physical therapy programs not covered by insurance.
Meet Nathaniel from St. Louis, Missouri. A Happy and resilient personality who reminds us of how many ways people can have a voice beyond audible speech, and how important it is for everyone to have that right. At Go Shout Love we do amazing things for amazing families with kids on rare medical journeys. Each month we shout love for families through the sale of creative apparel inspired by kiddos like Nathaniel. Every purchase in March will be used to help purchase a bike trailer to allow Nathaniel to go biking with his family. Visit our website at goshout.love to support Nathaniel through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items
Josh and Jessica talk with Stephanie and Rodney, the parents of Sofia, a beautiful 6 year old who has Leukodystrophy and Epilepsy, and is our feature kiddo for this month. At Go Shout Love we do amazing things for amazing families with kids on rare medical journeys. Each month we shout love for families through the sale of creative apparel inspired by the kiddos.This month’s “Known & Loved” t-shirt design is inspired by Sofia, whose loving, warm, and silly personality allowed her to connect deeply with people at a very young age. Every purchase in February will be used to help remodel Sofia’s bedroom and bathroom to be adaptable and accessible. Visit our website at www.goshout.love to support Sofia through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items.
98 - Meet Mady K

98 - Meet Mady K

2022-01-1801:00:48

At Go Shout Love we do amazing things for these amazing families with kids on rare medical journeys then check out this month’s “Same Storm, Different Boat” design that is inspired by Maddy and Mady. Separated by only 80 miles, these sweet girls are navigating their own unique medical journeys, but have many experiences and battles they share with each other and other kiddos on rare medical journeys. Every purchase in January will be used to help cover the costs of medical and mobility equipment for Maddy and Mady not covered by insurance.Visit our website at goshout.love to support Maddy and Mady through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items.Our next episode will focus on another amazing family and an incredible kiddo. Stay tuned and Go Shout Love.
97 - Meet Maddy M.

97 - Meet Maddy M.

2022-01-0401:04:13

Go Shout Love is doing amazing things for amazing families with kids on rare medical journeys then check out this month’s “Same Storm, Different Boat” design that is inspired by Maddy and Mady. Separated by only 80 miles, these sweet girls are navigating their own unique medical journeys, but have many experiences and battles they share with each other and other kiddos on rare medical journeys. This episode surrounds Maddy M from Wamego, KS. We talk with her parents Megan and Joe about their journey, their family and everything in between.
Welcome back everyone today we are continuing our conversation with Cassie and Taylor the parents to Jensen lee, an 8 year old boy from Ava Missouri who has leukemia.By the time we are posting this episode they will have only known about the diagnosis for about 40 days, so this family is still in the newness of it all with a long journey ahead. This is part 2, so if you haven’t listened to part one, pause this and head back to that. Today we get to hear about how Jensen lee himself is doing, how he is handling his treatments and more about his wonderful personality. But it doesn’t stop there, both Cassie and Taylor are processing a lot of details and emotions and they are very generous to share that with us today.Connect with Cassie and Taylorhttps://www.facebook.com/cassie.f.wallacehttps://www.facebook.com/taylor.wallace.750Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Get ready to shout love for Jensen Lee!Jensen is a kind, compassionate, and loving 8-year-old boy who loves dirt bikes, animals, and baseball. He lives in Missouri with his parents, Cassie and Taylor, his older brother, Jack, and younger sister, Charlie.This month’s “Brave” t-shirt design is inspired by Jensen and his journey with B-Cell Acute Lymphoblastic Leukemia. Every purchase in November will be used to help cover the costs of travel and housing expenses for Jensen Lee’s treatments.We invite you to watch his video, read his story and subscribe to our podcast to listen to a couple conversations with his parents.Get ready to shout love for Jensen Lee!Jensen is a kind, compassionate, and loving 8-year-old boy who loves dirt bikes, animals, and baseball. He lives in Missouri with his parents, Cassie and Taylor, his older brother, Jack, and younger sister, Charlie.This month’s “Brave” t-shirt design is inspired by Jensen and his journey with B-Cell Acute Lymphoblastic Leukemia. Every purchase in November will be used to help cover the costs of travel and housing expenses for Jensen Lee’s treatments.We invite you to watch his video, read his story and subscribe to our podcast to listen to a couple conversations with his parents.Connect with Cassie and Taylorhttps://www.facebook.com/cassie.f.wallacehttps://www.facebook.com/taylor.wallace.750Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This is part 2 of the conversation surrounding our feature kiddo Gabriel. We are talking with Stephanie and Scott, Gabriels parents. If you haven’t listened to part 1 yet, pause this episode and go back. There is a lot of context surrounding Gabriel and his background that will play a lot into this episode as well. Today’s episode includes a lot of what is important for this family, including experiences. Living life to its fullest. We really didn’t touch on the medical side in part 1, but this episode includes a lot of that journey as well. Gabriel has been through a lot of procedures and is shown how much of a fighter he is.Connect with Stephanie and Scotthttps://www.facebook.com/stephanie.santomangohttps://www.instagram.com/gabriels_gains/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This month we are talking to Scott and Stephanie who are the parents to the always smiling, music loving 5 year old Gabriel.Gabriel has been diagnosed with cerebral palsy and has a number of challenges and therapies that come with that diagnosis. Stephanie and Scot are going to fill us in on all of that. But what they also talk about is how Gabriel initially came into their lives and how the dynamic of their family is forever changed by this incredible little boy’s journey through foster placement and how that has lead to including another very important family member, Gabriels foster sister. There are many levels of inclusion layered throughout this entire conversation and we are excited to share that with you.Connect with Stephanie and Scotthttps://www.facebook.com/stephanie.santomangohttps://www.instagram.com/gabriels_gains/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Cece is our feature kiddo for the month of September 2021 and she has Pitt Hopkins Syndrome. This diagnosis comes with its challenges and that is how this episode starts off, with some of the difficulties and how this family is overcoming some of those. But the journey doesn’t begin and end with challenges and difficulties, those are elements involved. But other elements that are also very present are the joys…the positives…the love. Thats what this episode is, it is a great insight to the life of a beautiful little girl like cece. Someone who will brighten your day. This episode also tackles a very big topic of “belonging” and what that really means to families like cece’s, but it doesn’t stop there. Belonging is for everyone and is something everyone deserves and how we can all have an impact on that.
Welcome to September 2021 as we feature a new family and a new kiddo. This month we are introducing you to Cecily…or Cece as her family affectionally calls her. Cece is a joyful and social 4 yr old who has been diagnosed with Pitt Hopkins syndrome. Today we are talking with Louie and Lizzy who are Cece’s parents. There is a lot covered in this first episode, including getting to know the family through two great personalities in Louis and Lizzy. They talk about the journey of discovering the diagnosis and the various kinds of interactions with medical professionals. Some diagnosis are discovered before birth, Pitt-Hopkins is not one of those. Neither are easy, but this what Lizzy and Louie will walk us through. Connect with Louie and Lizzyhttps://www.facebook.com/ElizabethLucyDiNuzzohttps://www.instagram.com/lizzydinuzzo/https://pitthopkins.org/cecilys-smile-squad/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 Aaron and Jen, the parents to Jesus our feature kiddo for the month of August 2021We ended the last episode talking about the unique combination and relationship that exists with Jesus and his parents. If you haven’t listened to that episode, I would stop this now and go back to part 1 first. It provides a lot of context for what you will hear today.We cover so much with this episode, from the impact Jesus has on this family, the daily life and challenges from his diagnosis and of course his back story, which is very unique to anyone, much less a child on a rare medical journey. This family is summed up as I mentioned before, love, advocacy, inclusion and…to add in… faith, not just for Jesus, but for all of their kids. Connect with Aaron and Jenhttps://www.facebook.com/jennifer.mathews.357https://www.instagram.com/themathewslife/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
“He 110% loves to be held all day long. It’s the sweetest thing. We will lay him down, and his eyes pop open and he starts to look around. Once we pick him up, he’ll start laughing, because he knows. He continues to change the longer he’s been in our home, and I can only pray that as he gets older, he continues to show his preferences about stuff because that was something that was never expected of him. His opinion matters, it matters to all of us. I make sure that it matters to anyone we come into contact with because he needs to be respected like all people should. Whether he can voice it or not, he has preferences.” This month’s “Joy is where You Are” design is inspired by Jesus, a cheerful, loving, and sweet two-year-old from Houston, Texas who brings joy to everyone he meets. Every purchase in August will go towards making modifications to the family’s van to make travel easier and more comfortable for Jesus. Visit our website at goshout.love to support Jesus through the purchase of a t-shirt, tank-top, hat, tumbler, or other items.Connect with Aaron and Jenhttps://www.facebook.com/jennifer.mathews.357https://www.instagram.com/themathewslife/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 Kati and Derek, the parents to Haylee who is our feature kiddo for the month of July. If you haven’t listened to part 1 I recommend pausing this and going back one, it provides a lot of context to what we will talk in this episode. That last one was about their medical journey and Haylee’s personality. Today we are going to go further into the daily challenges surrounding her diagnosis which includes sleeping at night. Every purchase in July on our website will go towards helping this family purchase a sleep safe bed. Connect with Derek and Katihttp://www.facebook.com/kkennedy915https://www.instagram.com/kennedy_mama3/Connect 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 feature family. Today we are talking with Kati and Derek, the parents to Haylee, a sassy, smart and determined 3 year old girl from Overland Park, KSHaylee has been diagnosed with RYR-1 or also known as Central Core disease.Derek and Kati tell you more about Haylee’s medical journey, her diagnosis and what this means for her daily life. There is a lot there to unpack and some details that are unique to Haylee. This is part 1 of two episodes of the conversation with Derek and Kati, it begins with talking about Haylee, her personality, her relationship with her brother and then into her diagnosis. But a large part of this episode centers around being and advocate for Haylee and then ultimately for other kids like Haylee. These parents are great examples of advocacy in the hospital, their son is a great example of being an advocate as a child and a sibling, and then they take it a step further by joining a parent board to speak up for additional kiddos on medical journeys. Connect with Derek and Katihttp://www.facebook.com/kkennedy915https://www.instagram.com/kennedy_mama3/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This episode is Part 2 of the conversation with Aaron and Andrea, the parents to Jaelyn and Reagan who are sisters from Iowa living joyfully with undiagnosed conditions. Jaelyn is a patriotic, silly, and strong eleven-year-old who enjoys music, school, and the color purple. This episode touches on key topics that exist with many families we feature like finding the joy in the small moments and how those can come through the uniquely and constantly present challenges with daily activities and spontaneous moments. There is difficulty working around physical limitation and anxiousness surrounding the unexpected. This is especially hard for people like Andrea who are planners and have had to adapt to a life where planning ahead isn’t possible. Connect with Aaron and AndreaIG: www.instagram.com/its.a.butiful.life/FB: https://www.facebook.com/jaelynsjourneyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
Jaelyn and Reagan are sisters from Iowa living joyfully with undiagnosed conditions. Jaelyn is a patriotic, silly, and strong eleven-year-old who enjoys music, school, and the color purple. Reagan is a determined, silly, and shy three-year-old who likes playing outside, books, and baby dolls. Jaelyn and Reagan’s journey encourages us to not worry about yesterday or tomorrow, but to stay present in today. They both love playing with their sister five-year-old sister, Shelby. Today's episode centers around Jaelyn's medical journey and how the family has grown and adjusted. Connect with Aaron and AndreaIG: www.instagram.com/its.a.butiful.life/FB: https://www.facebook.com/jaelynsjourneyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
This is part 2 of the conversation with Kelly who is the mother to Avery. Avery is our feature kiddo for the month of May 2021. I would recommend listening to part 1 if you haven’t yet. That episode gives a lot of context for Avery’s medical journey and the background for Kelly and her husband Mark. We ended the last episode talking about conversations, interactions and phrases that cause some separation between families with kinds on rare medical journeys and people who haven’t walked that path. To be clear this is not a place of judgement on people who make comments or say things that are hard to take in for these families. Kelly affirms that in this episode, but this is one major reason we have these conversations, so that we can all learn how to bridge that gap and be more inclusive and together rather than separate.Connect with Mark and Kelly:IG: https://www.instagram.com/twinadventurez/FB: https://www.facebook.com/profile.php?id=100009318677558Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
New month and a new kiddo. This month we are featuring a young boy named Avery. We are talking with his mother Kelly about the medical journey for Avery and what that has meant for their family including Avery's twin sister Emma. This is part one of the conversation with Kelly and one that centers around a very rare diagnosis along with how we can learn from other's reactions and words. Both Mark and Kelly have military background in the Navy. We recorded this at a time when Mark couldn't participate, but we would like to thank both of them for their service and sacrifice as we shout love this month for them. Connect with Mark and Kelly:IG: https://www.instagram.com/twinadventurez/FB: https://www.facebook.com/profile.php?id=100009318677558Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/
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