Filtrer par genre
- 130 - 131 - Catch Your Breath and Look Around: Meet Ellie
This month, we're featuring Ellie, a four-year-old from Litchfield, New Hampshire. She loves school, music, dancing,and, yes, horseback riding! Ellie has been diagnosed with a very rare condition called Rubinstein-Taybi syndrome.
There's too much to cover about her diagnosis in a brief format, so we will let Taylor, Ellie's mother, explain it in more detail.We're incredibly grateful to Taylor for allowing us into their lives and sharing Ellie's story – from the early stages of the diagnosis to her personality and her relationship with her two-year-old brother.
You may not get to meet Ellie in person,but you'll fall in love with her just by hearing about her.Tue, 14 May 2024 - 129 - 130 - Together is the Best Adventure - Meet Arlee and AbelSay hello to Arlee and Abel!👋you
Arlee (7) and Abel (3) are from Gregory, Michigan where they enjoy spending lots of time outdoors!
Their life, like any other, is filled with moments of joy, laughter, and love. Yet, their journey is also marked by resilience, strength, and the unyielding bond that holds them together, especially in the face of challenges posed by a rare condition called Friedreich's Ataxia.
Throughout April, we’ll be shouting love for these two to help raise awareness and financial support for a reliable vehicle to transport them to and from appointments in Philadelphia.
We invite you to listen to a conversation with their parents, Becca and Myles.Tue, 09 Apr 2024 - 128 - 129 - Good Time Only - Meet EliShout love for Elias!
Elias, lovingly known as Eli, is a seven-year-old kid from Bloomfield, Indiana who loves arts and crafts, playing outside, and sweet treats!
In today's episode we are talking with the parents to Eli and they are going to walk us through everything from Eli's personality, what he likes what he doesn’t like…and of course his medical journey from day one until now.
Throughout March, we’ll be shouting love for Eli to raise awareness for his rare medical journey with 9p24.3 duplication, aspiration/dysphagia, and autism.Tue, 12 Mar 2024 - 127 - 128 - Beautifully Bright - A talk with SullyWe have a special bonus episode this month on the go shout love podcast. One of our favorite things to do is interview either the kiddos themselves if possible, or their siblings. This month the sibling love between Brighton and sully is beyond endearing and we had to share it. We had a chance to talk with Sully about being Brighton’s brother. He is a funny and intelligent kid and we hope you enjoy listening as much as we enjoyed talking to him.Tue, 20 Feb 2024
- 126 - 127 - Beautifully Bright - Meet BrightonBrighton is a bubbly, cheerful and sweet two-year-old who loves all things Disney! Nestled in Mississippi, she shares her days with her loving parents, Josh and Kelly, and her older brother, Sully. Their family time is filled with warm embraces and cozy movie nights.
Brighton's journey took an unexpected turn within her first year when she was diagnosed with Leigh Syndrome, a rare mitochondrial disorder. Despite the hurdles she faces, Brighton remains a beacon of light in every room she enters.
In honor of Brighton's story, we present this month's "Beautifully Bright" t-shirt design. Throughout February, every purchase will contribute towards alleviating the financial strain of medical bills and acquiring necessary equipment for Brighton, expenses not covered by insurance.
Visit www.goshout.love to support Brighton through the purchase of a t-shirt, hat, hoodie, or other items.Tue, 13 Feb 2024 - 125 - 126 - Love Your People: Meet PaisleyPaisley was diagnosed with Neonatal Marfan’s syndrome shortly after birth, a condition occurring at a frequency of 2 to 3 people per 10,000.Paisley’s medical story began with a dramatic entrance, marked by a c-section due to her fluctuating heart rate. The discovery of a heart murmur, turned-in feet, and unusually long fingers prompted a swift transfer to a different hospital, where the diagnosis unfolded. Neonatal Marfan’s syndrome, a rare connective tissue disorder, became the new reality for Marissa, Chris, and their newborn daughter.
Amidst the shock and uncertainty, the couple navigated the complex world of rare medical journeys, seeking answers and understanding.Tue, 09 Jan 2024 - 124 - 125 - Bloom Where You Are Planted - Meet ColbiToday we share the story of a four-year-old girl from Mississippi named Colbi. Colbi’s parents, Megan and Joseph, will be joining us to shed light on their daughter's extraordinary medical journey, battling Combined D2-L2 HGA, and the unique challenges of being just the second documented case in the United States.Tue, 07 Nov 2023
- 123 - 124 - Celebrate the Good Days - Meet PaisleySay hello to our new friend, Paisley!
Paisley is a caring, silly and fierce seven-year-old from Kaukauna, WI where she lives with her parents, Ashley and Joshua, and brothers, Noah and Brooks. Paisley loves singing, dancing and being around people.
Throughout the month of October, we’ll be shouting love for Paisley to raise awareness for her rare medical journey with Neurocutaneous Melanocytosis with Hydrocephalus.Tue, 10 Oct 2023 - 122 - 123 - Bravery Knows No Size - Meet AdelynSay hello to Adelyn!
Adelyn is a feisty, joyful, and tenacious three-year-old from Dawsonville, Georgia where she lives with her parents, Cat and Jeff, and big sis, Autumn. Adelyn loves snuggles, light-up toys, music, and a good ‘ol tickle fest!
Shortly after birth, Adelyn was diagnosed with Trisomy 18, a rare disorder in which babies are born with 3 copies of chromosome 18 instead of 2.
Throughout the month of September, we’ll be shouting love for Adelyn to help raise awareness for her rare medical journey with Trisomy 18 while also raising funds for the cost of a screened in back porch so Adelyn can enjoy being outside despite her extreme sensitivity to light.Tue, 12 Sep 2023 - 121 - 122 - The Hard Roads -Meet CarolineSay high to Caroline👋Caroline is a happy and curious two year old girl from Peachtree City, GA who loves music, Bluey and staying busy!Throughout the month of August we’ll be shouting love for Caroline to help raise awareness for her rare medical journey with Hypoxic Ischemic Encephalopathy, Cerebral Palsy and Dystonia.Tue, 08 Aug 2023
- 120 - 121- Every Breath A Gift
Today’s episode is with Daniel and Roxy, the parents to 3-year-old Sebastian, our featured kiddo for the month who has a number of diagnosis, one of which is Vacterl Association. Daniel and Roxy do an excellent job of painting a picture for us surrounding the journey of how they got this diagnosis and what that means for Sebastians development and day to day life.
Sebastian has 2 siblings, Lila who is 6 and Alaric who is also 3. That is right, Alaric and Sebastian are twins and today we will get to hear something that we don’t really come across often which is a set of twins and only one of them carries the diagnosis. If you haven’t had a chance yet, go to our website or Facebook page and watch the video to see these siblings together. They are exactly what you would think 3 year old twin boys would be and more…especially with an adoring big sister.
This episode is full of stories, insights and love…a lot of love.Tue, 11 Jul 2023 - 119 - 120-DoSmallThingsWithGreatLove - Part 2
Today is our special bonus episode for this month where we get to the talk with the actual kiddos that we are featuring. Zachary, Amelia and Luke from Foley, Alabama.
These three incredible kids are living with unyielding spirit despite the challenges posed by a rare genetic disease called mucopolysaccharidosis type I (MPS 1). Together, this family weaves a tapestry of love and resilience that transcends the boundaries of hardship and shines a light of hope for others.
Episodes like the one you are about to listen to don’t come about often, but are some of our favorite ways for you to get to know the kids. This conversation is very lighthearted, but extremely endearing. It is shorter than our usual episodes, but just as meaningful. Although we ask them questions about their likes and dislikes, they do share also about their diagnosis and their upcoming surgeries.
Hearing from the kids themselves is beyond refreshing and we hope you enjoy listening as much as we enjoyed recording. I guarantee that you will smile frequently while during this episode.Tue, 20 Jun 2023 - 118 - 119 - Do Small Things With Great Love - Meet Zachary, Amelia, and LukeMeet Zachary, Amelia, and Luke from Foley, Alabama. These three incredible kids are living with unyielding spirit despite the challenges posed by a rare genetic disease called mucopolysaccharidosis type I (MPS 1). Together, this family weaves a tapestry of love and resilience that transcends the boundaries of hardship and shines a light of hope for others.
Today we hear from Mich and Brooke, the parents of these incredible kids, who will guide us through their lives.
Throughout the month of June, we’ll be shouting love for the Thomas family and raising awareness for MPS1. Visit www.goshout.love to read about their rare medical journey.Tue, 06 Jun 2023 - 117 - 118- Make Waves - Meet Kai“On a cellular level, Kai’s muscle fibers are misshapen which impacts the way she can contract her muscles, which ultimately leads to severe muscle weakness from head to toe. It takes fifty-two muscle pairs to swallow, so Kai is not able to swallow; the secretions impact her eating and respiratory function.” Kate shares.
Get ready to hear from Kai's parents, Kate and Drew Livingstone, on the latest episode of the Go Shout Love podcast! They'll be sharing their journey with Nemaline Rod Myopathy, so be sure to subscribe to our podcastTue, 09 May 2023 - 116 - 116 - Bold and Kind - Meet MadisonWhen Madison reached five months old, her doctors grew concerned that she wasn't growing or measuring on the growth chart, her forehead was misshaping, and she had scoliosis with a 45-degree curve in her spine. With loose joints and everything clicking and popping out of place, Madison was sent to Standford for more testing.
A complete head-to-toe skeletal survey showed that along with having flatter bones, both of Madison’s elbows were dislocated, her shoulders weren’t ossifying and she had abnormalities in her pelvis, known as trident acetabulum, which is an indication of skeletal dysplasia.
And so, the family was referred to genetics with the hope for more concrete answers.Tue, 11 Apr 2023 - 115 - 115 - Stronger Together - A Closer Look at Myasthenia GravisToday we have a special additional episode this month as we are talking with Dr. Jonathan Strober the Director of the Neuromuscular Clinic at Benioff Children’s Hospital at the University of California San Francisco as well as Meredith O'Connor the Assistant Vice President for Patient Engagement, Advocacy & Policy for Myasthenia Gravis Foundation of America.
Normally our episodes are geared towards the families and hearing their stories but today we are going to get an expert look…a sort of behind the scenes glimpse from the professionals that are associated with Myasthenia Gravis.Tue, 21 Mar 2023 - 114 - 114 - Stronger Together - Meet Elizabeth and CharlotteSay hello to our new friends, Elizabeth + Charlotte!
These sisters are from Redding, California where they live with their parents, Stephanie and Dustin. They love family game night, building legos, and arts + crafts!
Together they are navigating uncharted territory in the world of rare medical journeys. Throughout the month of March, we’ll be shouting love for Elizabeth and Charlotte to raise awareness for their journey with Generalized Myasthenia Gravisand Systemic Autoinflammatory Disease along with financial support for the cost of medical infusions not covered by insurance and research funding for Pediatric Myasthenia Gravis.Tue, 07 Mar 2023 - 113 - 113 - Savor the Sweet Life: Meet RowanOn May 7th, 2012, Erin welcomed her second baby girl, Rowan, into the world. Everything went smoothly until Rowan was four months and started showing some odd behaviors, such as:Eating differentlyTight fists, clenching her thumbsWasn’t sitting up or attempting to roll overDespite not hitting some milestones, Rowan was a social butterfly. She loved engaging with people and her laughter often filled a room. But as time went on, Erin’s concerns only grew. At nine months old, Rowan met with her pediatrician for an MRI. Initially, the neurologist suspected that Rowan had cerebral palsy, but after a second opinion, she was re-diagnosed with Bilateral Perisylvian Polymicrogyria (BPP).
Rowan is loved by her mom and her sister and their bond is wonderful story that they will share with you in this episode.Tue, 07 Feb 2023 - 112 - 112 - Stay Curious Part 3 - Meet Ruby
Ruby is eight-year-olds and is known as being a sassy, sweet, and kind little girl. She loves Sesame Street, reading books and listening to music. Along with navigating her rare medical journey with Coffin-Siris syndrome, Ruby is also diagnosed with autism and developmental delay. She uses her own special form of sign language and her AAC to communicate and eats through a g-tube. Throughout January, we’ll be shouting love for Ruby and two other kids who are also navigating life with CSS.
Tue, 24 Jan 2023 - 111 - 111 - Stay Curious Part 2 - Meet AuronMeet Auron.
Auron is ten years old and is known as being a persistent, playful and curious kid. Auron loves going to school, going on adventures, making creations with Duplo Legos and watching his favorite movie, Toy Story.
Throughout January, we’ll be shouting love for Auron and two other kids from the Indianapolis area who are also navigating life with Coffin-Siris syndrome. Visit the link in our bio to learn more about Auron’s story.Tue, 17 Jan 2023 - 110 - 110 - Stay Curious: Part 1 - Meet StellaMeet Stella,
Stella is six years old and lives with her mom and dad, Pam + JC. She is known as being a silly, curious, and energetic little girl who loves letters, numbers, and going for walks.
While navigating life with Coffin-Siris syndrome and Autism, Stella attends speech, nutrition, developmental and vision therapy. She has come a long way on her nutrition journey and is now focusing on ways to communicate.
Throughout January, we’ll be shouting love for Stella and two other kids from the Indianapolis area who are also navigating life with CSS.Tue, 10 Jan 2023 - 109 - 109 - Resilient - Meet Thatcher
Everybody say hello to Thatcher!
Thatcher is a vibrant, joyful, and resilient six-year-old from Redmond, Oregon where he lives with his parents, Nicole and Nicholas, and two siblings, Weston and Chloe. Thatcher loves going to kindergarten, fast cars, and playing with balls.
We’re so excited to share more about Thatcher this month and to raise awareness about his rare medical journey with Rhizomelic Chondrodysplasia Punctata (Nonclassic form).
Visit www.goshout.love to watch his video, read his story, and subscribe to our podcast to listen to an interview with his mom and dad.
#goshoutlove #shoutloveforThatcherTue, 08 Nov 2022 - 108 - 108 - More to the Story - Meet Isla
As part of the hospital’s protocol, CPS was called while the ER continued to take care of Isla. A full body x-ray was done and showed that along with a broken leg, all of Isla’s ribs were revealed to be healed fractures. Under the impression that more tests needed to be done, Nick and Mandy waited to be admitted to the hospital, but behind-the-scenes, the local police department were being contacted.
And this was just the beginning as we feature courageous Isla this month.
Isla is a courageous, spirited and intelligent five-year-old from San Jose, California where she lives with her parents, Mandy and Nick, and two siblings, Noah and Charlotte. Isla loves dancing, going to church and snuggling with babies!Tue, 11 Oct 2022 - 107 - 107-Built For Life-Meet Karder
Today we are talking with Lacey and Mitch as they break down for us, life with Karder, beginning with receiving his diagnosis of Trisomy 18 and how that diagnosis labeled his early life and propelled him to the boy he is now. If you listened last week we featured another kiddo, Charolette who also has trisomy 18. There are a lot of similarities to these stories as well as some uniqueness for each one.
Lacey and Mitch will help guide us along their medical journey and then the impact Karder has had on them, their boys and their community.Tue, 20 Sep 2022 - 106 - 106 - Built for Life - Meet Charolotte
It is a bright, sunny and warm day here in Ohio and we are in the living room with Nick and Hailey who are the parents to Charlotte, a sassy and happy 4 year old girl with trisomy 18. During this conversation she is playing on the floor in front of us. She is one of two feature kiddos for this month who are both diagnosed with trisomy 18 and the common theme between them is they were both labeled as incompatible with life. You will soon find out in this episode and the next that these kids are quite the opposite and in fact built for life.
Tue, 13 Sep 2022 - 105 - 105 - Simply Joy - Meet Wyatt
When Wyatt was two-and-a-half years old, he was diagnosed with Kleefstra syndrome.
Kleefstra syndrome is a rare genetic condition that affects 1:120,000 individuals and is characterized by intellectual and cognitive delays. Other symptoms include heart conditions, vision issues, and hearing loss.
Our podcast interview with Wyatt’s parents, Jolene and Braxton, launches tomorrow on the Go Shout Love podcast. Subscribe today to learn more about Wyatt’s rare medical journey.Tue, 09 Aug 2022 - 104 - 104 - Climb and Shine: Meet Roslyn and Maddox
Roslyn is a cheerful, cheeky, and bright eight-year-old who loves candy, her family, and powerwheel soccer. Her little brother, Maddox, is a smiley and joyful one-year-old. Together, they are navigating an undiagnosed rare medical journey.
Throughout the month of July, we’ll be shouting love for Roslyn and Maddox. Visit www.goshout.love to learn more about their story.
All items in the shop during the month of July, including this “Climb & Shine” tee, will go toward the purchase of a wheelchair van to help Roslyn & Maddox get around safely.
#goshoutlove #shoutloveforRosynandMaddoxTue, 12 Jul 2022 - 103 - 103 - Celebrate Always - Meet Emmi
“I believe with all my heart that Emmi is exactly who she is supposed to be. She’s here for a purpose; her having special needs doesn’t make her purpose in life any less meaningful than ours. I feel like she is here to teach a lot of different lessons. Since having Emmi, she’s opened up our world to special needs kids and it changed us. She’s changed us for the better.”
Abby Wilkey, Emmi’s mom
Throughout the month of June we’ll be shouting love for this sweet girl and raising awareness about her rare medical journey. Visit www.goshout.love to learn more about Emmi and how you can shout love with us this month.
#goshoutlove #shoutloveforEmmiTue, 07 Jun 2022 - 102 - 102 - Courageously Into The Unknown - Meet Elijah
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.Tue, 10 May 2022 - 101 - 101 - Keep Crushin' It - Meet Jack
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.Tue, 05 Apr 2022 - 100 - 100 - A Voice Is Power - Meet Nathaniel
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 itemsTue, 08 Mar 2022 - 99 - 99 - Known and Loved - Meet Sofia
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.Tue, 08 Feb 2022 - 98 - 98 - Meet Mady K
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.Tue, 18 Jan 2022 - 97 - 97 - Meet Maddy M.
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.Tue, 04 Jan 2022 - 96 - 96 - Meet Jensen Lee - Part 2
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 Taylor
https://www.facebook.com/cassie.f.wallace
https://www.facebook.com/taylor.wallace.750
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 09 Nov 2021 - 95 - 95 - Meet Jensen Lee - Part 1
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 Taylor
https://www.facebook.com/cassie.f.wallace
https://www.facebook.com/taylor.wallace.750
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 02 Nov 2021 - 94 - 94 - Meet Gabriel - Part 2
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 Scott
https://www.facebook.com/stephanie.santomango
https://www.instagram.com/gabriels_gains/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 12 Oct 2021 - 93 - 93 - Meet Gabriel - Part 1
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 Scott
https://www.facebook.com/stephanie.santomango
https://www.instagram.com/gabriels_gains/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 05 Oct 2021 - 92 - 92 - Meet Cecily - Part 2
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.Tue, 21 Sep 2021 - 91 - 91 - Meet Cecily - Part 1
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 Lizzy
https://www.facebook.com/ElizabethLucyDiNuzzo
https://www.instagram.com/lizzydinuzzo/
https://pitthopkins.org/cecilys-smile-squad/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 07 Sep 2021 - 90 - 90 - Meet Jesus - Part 2
This is part 2 of the conversation with Aaron and Jen, the parents to Jesus our feature kiddo for the month of August 2021
We 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 Jen
https://www.facebook.com/jennifer.mathews.357
https://www.instagram.com/themathewslife/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 10 Aug 2021 - 89 - 89 - Meet Jesus - Part 1
“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 Jen
https://www.facebook.com/jennifer.mathews.357
https://www.instagram.com/themathewslife/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 03 Aug 2021 - 88 - 88 - Meet Haylee - Part 2
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 Kati
http://www.facebook.com/kkennedy915
https://www.instagram.com/kennedy_mama3/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 13 Jul 2021 - 87 - 87 - Meet Haylee - Part 1
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, KS
Haylee 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 Kati
http://www.facebook.com/kkennedy915
https://www.instagram.com/kennedy_mama3/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 06 Jul 2021 - 86 - 86 - Meet Jaelyn and Reagan Part 2
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 Andrea
IG: www.instagram.com/its.a.butiful.life/
FB: https://www.facebook.com/jaelynsjourney
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Thu, 17 Jun 2021 - 85 - 85 - Meet Jaelyn and Reagan Part 1
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 Andrea
IG: www.instagram.com/its.a.butiful.life/
FB: https://www.facebook.com/jaelynsjourney
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 08 Jun 2021 - 84 - 84 - Meet Avery - Part 2
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=100009318677558
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 11 May 2021 - 83 - 83 - Meet Avery - Part 1
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=100009318677558
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 04 May 2021 - 82 - 82 - Meet Mayah - Part 2
This part 2 episode is all about Mayah’s impact on her school friends, on her family and all who get to meet her. It is a shorter episode, but it does not ease up on quality conversation about an incredible girl and the lessons she is teaching those around her.
Connect with Ryan and Angie
https://www.facebook.com/MiracleMayah
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 13 Apr 2021 - 81 - 81 - Meet Mayah - Part 1
Mayah is a happy, captivating and inspiring five year old from Maria Stein, Ohio. She loves her family, school and watching her favorite TV shows. Her beautiful smile and positive attitude bring joy wherever she goes!
This episode focuses on Angie and Ryan's medical journey with Mayah and touches on her personality and some insight into how Mayah is impacting the world one person at a time.
Connect with Ryan and Angie
https://www.facebook.com/MiracleMayah
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 06 Apr 2021 - 80 - 80 - Meet Leo - Part 2
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 support others during tough times. This is a shorter episode, but there is so much packed in.
Connect with Bob and Lauren
https://www.instagram.com/lauren_nia_lowery/
https://www.facebook.com/This-Little-Life-with-Leo-112059770189599
Blog: Thislittlelifewithleo.wordpress.com
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 16 Mar 2021 - 79 - 79 - Meet Leo - Part 1
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 journey of discovering what it means for this family.
Connect with Bob and Lauren
https://www.instagram.com/lauren_nia_lowery/
https://www.facebook.com/This-Little-Life-with-Leo-112059770189599
Blog: Thislittlelifewithleo.wordpress.com
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 09 Mar 2021 - 78 - 78 - Meet Ivy - Part 2
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 Byron
https://www.instagram.com/little_ivy_sunshine/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 09 Feb 2021 - 77 - 77 - Meet Ivy - Part 1
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 Byron
https://www.instagram.com/little_ivy_sunshine/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 02 Feb 2021 - 76 - 76 - Meet Eli and Zeke - Part 2
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 Eric
https://www.instagram.com/daidrahamlin/
https://www.facebook.com/daidra.hamlin.5
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 12 Jan 2021 - 75 - 75 - Meet Eli and Zeke - Part 1
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 Eric
https://www.instagram.com/daidrahamlin/
https://www.facebook.com/daidra.hamlin.5
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 05 Jan 2021 - 74 - 74 - The End of 2020 and Beginning of Something New
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.
Tue, 08 Dec 2020 - 73 - 73 - Meet Maddox and Paisley - Part 2
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 Sam
https://www.instagram.com/sduran626/
https://www.facebook.com/samantha.danielle.752
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 10 Nov 2020 - 72 - 72 - Meet Maddox and Paisley - Part 1
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 Sam
https://www.instagram.com/sduran626/
https://www.facebook.com/samantha.danielle.752
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 03 Nov 2020 - 71 - 71 - Meet Luna - Part 2
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 Glenn
https://www.instagram.com/the_empathic_nutritionist/
https://www.facebook.com/robyn.grogitsky
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 13 Oct 2020 - 70 - 70 - Meet Luna - Part 1
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 Glenn
https://www.instagram.com/the_empathic_nutritionist/
https://www.facebook.com/robyn.grogitsky
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 06 Oct 2020 - 69 - 69 - Meet Emma & Abby - Part 2
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.lightningandlove.org
https://www.instagram.com/lightningandlove/
https://twitter.com/mariahgillaspie
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 15 Sep 2020 - 68 - 68 - Meet Emma & Abby - Part 1
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 Mariah
www.lightningandlove.org
https://www.instagram.com/lightningandlove/
https://twitter.com/mariahgillaspie
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 08 Sep 2020 - 67 - 67 - Meet Teddy - Part 2
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 Liz
https://www.facebook.com/elizabeth.bronson.1
https://www.instagram.com/elizabethnicole88/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 18 Aug 2020 - 66 - 66 - Meet Teddy - Part 1
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 Liz
https://www.facebook.com/elizabeth.bronson.1
https://www.instagram.com/elizabethnicole88/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 11 Aug 2020 - 65 - 65 - Meet Sydney
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 Samantha
https://www.facebook.com/groups/sydthekid/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 04 Aug 2020 - 64 - 64 - Meet Fletcher - Part 2
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 Denise
https://www.instagram.com/Mommyburns/
https://www.facebook.com/denise.milgrimburns/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 14 Jul 2020 - 63 - 63 - Meet Fletcher - Part 1
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 Denise
https://www.instagram.com/Mommyburns/
https://www.facebook.com/denise.milgrimburns/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 07 Jul 2020 - 62 - 62 - Meet Shiloh - Part 2
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 Katie
https://www.instagram.com/colton.christofferson/
https://www.instagram.com/katiechristofferson_/
https://www.facebook.com/katie.christofferson.12
https://www.facebook.com/colton.christofferson.92
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 09 Jun 2020 - 61 - 61 - Meet Shiloh - Part 1
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 Katie
https://www.instagram.com/colton.christofferson/
https://www.instagram.com/katiechristofferson_/
https://www.facebook.com/katie.christofferson.12
https://www.facebook.com/colton.christofferson.92
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 02 Jun 2020 - 60 - 60 - Catching Up With Jack
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 Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 26 May 2020 - 59 - 59 - Catching Up With Evely
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 with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 19 May 2020 - 58 - 58 - Meet Molly - Part 2
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 herself and her family onward. Every purchase from the Go Shout Love shop in May will help cover the cost of installing a wheelchair ramp in Molly’s home and the home of family members who help care for Molly. Support Molly now with a purchase at www.goshout.love.
Connect with Jess & Kevin:
http://instagram.com/jesskramer
http://instagram.com/kozmok
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 12 May 2020 - 57 - 57 - Meet Molly - Part 1
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 onward. Every purchase from the Go Shout Love shop in May will help cover the cost of installing a wheelchair ramp in Molly’s home and the home of family members who help care for Molly. Support Molly now with a purchase at www.goshout.love.
Connect with Jess & Kevin:
http://instagram.com/jesskramer
http://instagram.com/kozmok
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 05 May 2020 - 56 - 56 - The Journey of a Brave Woman
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 Marcela:
https://www.instagram.com/thejourneyofabravewoman/
https://www.facebook.com/MarceTurnage/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 28 Apr 2020 - 55 - 55 - Why You Should Wear Orange Socks with Dr. Gerald Nebeker
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 they thought they would have, and the life they were blessed with. Out of this reality, Dr. Nebeker launched Orange Socks, a community uniquely created to resource and support parents with kids on rare medical journeys.
He is an expert in nonprofit governance and is an advocate, researcher, and national presenter in the field of developmental disabilities. In 1987 he started RISE, Inc., a nonprofit organization which provides services for people with disabilities including residential settings, day programs, employment assistance, managed care, and home and community based services.
Connect with Orange Socks:
https://orangesocks.org/
https://www.instagram.com/orangesocks__/
https://www.facebook.com/orangesocks.org/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 21 Apr 2020 - 54 - 54 - Clothing Equals Confidence with Mindy Scheier
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, Kohls, Nike, and Target.
Shop new designs in the GSL shop that are benefitting people with disabilities in response to COVID-19 at https://goshout.love.
Connect with Mindy:
https://www.facebook.com/runwayofdreams
https://www.instagram.com/runwayofdreams/
https://www.facebook.com/gamutmanagement
https://www.instagram.com/gamutmanagement/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 14 Apr 2020 - 53 - 53 - COVID-19 Relief opportunity with Squirmy & Grubs
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 grateful to be partnering with in April to help provide Covid-19 relief resources for people on rare medical journeys. Half of all gross profit during April will sales will help provide $100 gift cards for those who need it most.
Shop new designs now at https://goshout.love.
Connect with Shane & Hannah
https://www.instagram.com/shaneburcaw/
https://www.instagram.com/hannahayl/
https://www.instagram.com/laughingatmynightmareinc/
https://www.laughingatmynightmare.com/
https://www.youtube.com/channel/UCdomP1JqhnyBQGaBmfDl4KQ
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 07 Apr 2020 - 52 - 52 - Swimwear for all
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 started.
Connect with Victory Adaptive Collection:
https://victoryadaptivecollection.com
https://www.facebook.com/victoryadaptivecollection
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 31 Mar 2020 - 51 - 51 - Lifelong Bonds and the Power of Team
An organization that means a lot to Maddy (this month's featured kiddo) is a nonprofit called Team IMPACT which has given her the opportunity to be part of the Syracuse University Women's Lacrosse team. In this episode, Josh chats with Ali Peters and Shanna Gershman, two staff members of Team IMPACT, who give us an overview of the organization and insight into the amazing work they are doing.
Connect with Team IMPACT:
https://www.teamimpact.org/
https://www.instagram.com/goteamimpact/
https://www.facebook.com/GoTeamIMPACT/
Connect with Go Shout Love:
https://goshout.love
https://www.instagram.com/goshoutlove/
https://www.facebook.com/goshoutlove/Tue, 24 Mar 2020 - 50 - 50 - Five Tips for Disability Inclusion
Josh chats with disability inclusion educator, Tina Beauvais. A mom of five, including one on a rare medical journey, you will hear how the passion behind her work is an extremely personal one. Tina B. shares extremely helpful insights for kids and adults in creating equitable spaces.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Tina B.:
https://disabilitieseducator.com
https://www.instagram.com/disabilityinclusioneducator/
https://www.youtube.com/channel/UCeneMrxPZaksNzjDJzRh-0Q
https://www.facebook.com/Tina-B-Disability-Inclusion-Educator-103207564480690/
This episode brought to you by:
https://victoryadaptivecollection.comTue, 17 Mar 2020 - 49 - 49 - A Planner for the Caregiver
look into a planner that is uniquely designed to meet the needs of families and caregivers loving little ones with special needs and the story behind the company making it happen. In this episode, Josh chats with Amanda Cunningham, founder of The Glory Days Co.
After receiving a diagnosis for her daughter, Amanda quickly realized the difficult realities of juggling multiple appointments, a new level of stress, and the importance of checking in on her herself to stay healthy and whole. It was in navigating that journey that Amanda realized a unique unmet need for a planner designed with the special needs caregiver in mind.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with The Glory Days Co.:
https://theglorydaysco.com/
https://www.instagram.com/theglorydaysco/
https://www.facebook.com/theglorydaysco/
https://twitter.com/theglorydaysco
This episode brought to you by:
https://www.chick-fil-a.com/OrderFood/ciceroTue, 10 Mar 2020 - 48 - 48 - Meet Maddy
Maddy is a spunky, brave, amazing five-year-old girl from Liverpool, New York. But her journey started with significant complications and difficult decisions for her parents coming at birth. This conversation with Maddy's parents, David and Erin, will walk you through the unexpected challenges they faced and what life has looked like for their family after receiving a diagnosis.
Maddy loves to spend her days making those around her laugh, playing with her toys, and being out and about with her family and peers. She has a personality that shines wherever she goes. She is a fighter, a go getter, and a change maker.
Learn more about this family's journey and see the "Amazingly Made" t-shirt design that is inspired by Maddy at www.goshout.love/Maddy. Every item sold in March will be used to help replace the deck in their backyard with a patio and ramp that is easy for Maddy to navigate.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Maddy's family:
https://www.instagram.com/AmazinglyMaddy/Tue, 03 Mar 2020 - 47 - 47 - Catching up with Silas
Josh & Kristin have a chat with our first official family, the Jacobsens. We featured their son, Silas, back in June 2014. This was the first month we designed a t-shirt inspired by a kiddo’s story. We’ve been connected with Si and his family for six years now. It’s been beautiful to watch Silas grow up and see his Allison and Sol blossom into parenthood. In this episode, Allison gives us an authentic look into their journey and a sincere glimpse into some of the darkness that can surround the grief of diagnoses. We are so thankful for Allison and her transparency.
Every purchase from our shop in February will benefit this month's featured kiddo, Miller. This includes the popular "All the Cool Kids Make a Difference" t-shirt design that was inspired by Si, found here: https://goshout.love/shop/all-the-cool-kids-adult-tee/
Connect with Allison:
https://www.instagram.com/arjake/
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
This episode brought to you by:
http://ARemarkableHome.comTue, 25 Feb 2020 - 46 - 46 - Two Moms, Two Boys, & An Unbreakable Bond
“We were never meant to journey this life alone. The power of community and being together-there is not much that comes close to the hope and strength that is needed to get through things.”
This episode is truly something special. We sat down with Katie and Jacque, the moms to Beckett and Miller, and talked about how the diagnoses of their boys brought them together. It is a conversation about loss and support, community, and friendship.
Learn more about this month's family and see the "See Beyond the Giant" t-shirt design that is inspired by Miller at www.goshout.love/Miller.
Connect with Jacque:
http://instagram.com/jacthweatt
Connect with Katie:
http://instagram.com/beckettstrong1
http://instagram.com/kspenc73/
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
This episode brought to you by:
http://ARemarkableHome.comTue, 18 Feb 2020 - 45 - 45 - Remembering Beckett
In February of 2019 we featured a sweet boy from Texas named Beckett. He stole the hearts of the entire Go Shout Love community. With the support raised through sales during the month, Beckett and his family were able to visit Disney World, checking off the top item on their bucket list for Beckett. Just a couple weeks after returning from their trip, Beckett passed away, ending an incredibly brave battle with Leigh's syndrome.
In this episode, Josh and Seth sit down with Beckett's parents, Tyler and Katie, where they give a raw and honest take on what life has looked like for them as they've walked this incredibly difficult road. They touch on how everyone grieves differently, how words and acts of support have helped carried them, how Beckett has inspired a legacy that continues to this day, and how a powerful relationship with February 2020's family (Miller) has created a bond that helps both families journey through tough days.
Learn more about this month's family and see the "See Beyond the Giant" t-shirt design that is inspired by Miller at www.goshout.love/Miller.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Katie:
http://instagram.com/beckettstrong1
http://instagram.com/kspenc73/
This episode brought to you by:
http://ARemarkableHome.com/Tue, 11 Feb 2020 - 44 - 44 - Meet Miller
In this episode we sit down with the Josh and Jacque, the parents of three-year-old Miller from Abilene, Texas. In this chat we learn about Miller's joyful and resilient personality, his diagnosis of Leigh syndrome, and a connection with a previous Go Shout Love family that nominated
Learn more about this family's journey and see the "See Beyond the Giant" t-shirt design that is inspired by Miller at www.goshout.love/Miller.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Jacque:
http://instagram.com/jacthweatt
This episode brought to you by:
http://ARemarkableHome.com/Tue, 04 Feb 2020 - 43 - 43 - Introducing a free resource and a new team member
Josh and Kristin introduce the newest member of the GSL team, Julie Walls! The three of them talk about Julie's background in education and how the journey of a former educator and current medical mom have brought a desire to see classrooms be a place of inclusion and kindness. Also introduced in this episode is a brand new free resource, specifically designed for classroom use, as a complement to The Thin Skin Gang book including activities for kids.
Get the Thin Skin Gang book and Classroom Resource:
https://goshout.love/classroom
For questions on The Thin Skin Gang Classroom Resource or becoming a sponsor:
Email Julie at julie@goshout.love.
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Josh:
http://instagram.com/joshveach
Connect with Julie:
http://instagram.com/juliewalls12
Connect with Kristin:
http://instagram.com/krisestokTue, 28 Jan 2020 - 42 - 42 - Catching up with Samuel
In this episode we hear from Allison, Samuel’s mom (August 2018), as we get an update on how they are doing and what has been going on since their time on Go Shout Love. The conversation covers surgeries Samuel has had, his experience with school and new friends, and becoming a big brother. Josh and Allison also chat about the power of leveraging social media as well as some precautions and boundaries to put in place to protect privacy.
This episode is full of updates and stories on how Allison and Jeff (Samuel’s Dad) are continuing on this encouraging, beautiful journey as a family.
See Samuel’s video and original podcast episode:
https://goshout.love/Samuel
Follow Samuel’s journey:
https://www.instagram.com/strengthforsamuel/
https://www.facebook.com/Strength-for-Samuel-1638013253119638/
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Josh:
http://instagram.com/joshveachTue, 21 Jan 2020 - 41 - 41 - Catching up with Sofia
Sofia is an amazing gal that our team was able to meet and feature in September of 2018. In this episode, Josh chats with Sofia's mom, Stefanie. They pickup from an earlier conversation on "inchstones" (episode two of the GSL Podcast), talk about the journey of Sofia starting school, and discuss the rollercoaster of processing pregnancy and family growth while on a rare medical journey.
See Sofia's video and original post:
https://goshout.love/sofia
Follow Sofia's journey:
https://www.instagram.com/sofias__story
https://www.facebook.com/Sofias-Story-766914376825426
Connect with Go Shout Love:
https://www.instagram.com/goshoutlove
https://www.facebook.com/goshoutlove
Connect with Josh:
http://instagram.com/joshveachTue, 14 Jan 2020 - 40 - 40 - Meet Stetson
Stetson is a strong, brave, and loving three year old from the Tampa, Florida area. He loves his parents, and you'll be able to tell in our conversation with Cody and Chelsea how deep their love is for him.
He loves fishing, going for car rides, and his animals. He smiles big when he is tickled, when friends come to visit, when he hears his mom’s voice, and when dad’s beard tickles his face.
Learn more about this family's journey and see a t-shirt inspired by Stetson at www.goshout.love/Stetson.Tue, 07 Jan 2020 - 39 - 39 - GSL Team Member Chat: Meet Paige
Meet the person you hear from the most without even realizing it! Paige Muller serves as our Social Media Coordinator and works incredibly hard to give people the opportunity to meet and fall in love with the amazing families we get to meet.
In this chat with Josh, Paige shares about the of intentional personal growth, the choice of perseverance, and how sometimes the simple act of choosing to show up and keep going can lead to clarity and breakthrough.
Connect with Paige in Instagram at https://www.instagram.com/paige.muller.Tue, 26 Nov 2019 - 38 - 38 - GSL Team Member Chat: Meet Seth
Meet our GSL storyteller, Seth Carnell. In this episode, Josh and Seth discuss family life, specifically the journey of being foster parents and adoption, as well as the "why" behind his work and why he chooses to shout love.
Tue, 19 Nov 2019 - 37 - 37 - Meet Ryker
Jessica and Seth chat with Ross and Amy, parents to Ryker, a happy, loving, and sweet seven year old boy from Lincoln, Nebraska. In honesty and vulnerability, these amazing parents open up about the reality of their journey including seeing their son no longer be able to say his ABCs or enjoy his favorite foods and knowing it is a fatal condition that is stealing these abilities.
Learn more about Ryker at www.goshout.love/Ryker.Tue, 12 Nov 2019 - 36 - 36 - Meet Sutton
Sutton is a brave, social, and inspiring gal from Lincoln, Nebraska and one of our featured kiddos for November. In this episode, Jessica & Seth sit down with her parents to learn more about their journey. They discuss the importance of community, the role school and other kids are playing in Sutton's life, the struggle in finding a diagnosis, and more.
Learn more about Sutton at www.goshout.love/Sutton.Tue, 05 Nov 2019 - 35 - 35 - New Book: The Thin Skin Gang
We're excited to announce the launch of a new children’s book on inclusion called "The Thin Skin Gang." This book is an invitation for inclusion of children with all abilities. It is designed to plant a seed in the imagination of children and spark a healthy conversation in the family or the classroom.
In this episode, Josh chats with Jason Sivewright and Courtney McNamara, the awesome people we were able to partner with to take this project from idea to published book. In addition to getting to meet Jason and Courtney, the book’s author and illustrator respectively, you will hear where some of the themes of the book came from and how the words have impacted us already.
Buy the book:
http://bit.ly/TheThinSkinGang
Connect with Jason:
www.facebook.com/sweetboybooks
www.sweetboybooks.com
Connect with Courtney:
www.facebook.com/Courtneymcnamaraart
Connect with Josh:
www.instagram.com/joshveach
www.facebook.com/joshveachTue, 29 Oct 2019 - 34 - 34 - Meet Case
Josh and Kristin sit down with Dan and Liz, the parents of Case and his three siblings. They share about personal growth and growth in their marriage, wrestling with faith, how Case's journey has helped them discover their calling, striking the right tone with medical professionals, and more. Learn more about Case and support this amazing family through a purchase at www.goshout.love/Case.
Tue, 22 Oct 2019 - 33 - 33 - Meet Jack
Jessica & Kristin sit down with Jack's mom, Cassie, Jack's Grammy, Nancy, and Jack's nurse, Ann. These amazing ladies share a variety of elements of Jack's story, including how Jack has impacted Cassie as she prepares students going into the field of special education. Learn more about Jack rally behind his family at www.goshout.love/Jack.
Tue, 15 Oct 2019 - 32 - 32 - Meet Levi
In this episode, Seth and Kristin chat with Brandon and Julie, the parents of Levi. They talk about processing emotions of receiving a terminal diagnosis before Levi was born only to find out through further testing that he had been misdiagnosed. They share about sibling connections, the power of community, and managing a tension of grief and joy in the midst of receiving difficult news. Learn more about their adorable kids and rally behind this family at www.goshout.love/Levi.
Tue, 08 Oct 2019 - 31 - 31 - Meet Avery
In this episode, Josh and Seth chat with Kevin and Alisha, the awesome parents of Avery. Avery is a silly, sweet, and sassy seven-year-old girl from Butler, Pennsylvania. She loves spending her days cuddling with her family, listening to music, and spending time with her sister, who affectionately dotes on her. Avery is the definition of strength and perseverance; she marches through life with the sweetest smile on her face.
Learn more about Avery's journey and support her through a purchase at https://goshout.love/avery!Tue, 01 Oct 2019
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