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 mo…

Say 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 chal…

Shout 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 med…

We 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 i…

Brighton 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 diag…

Paisley 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 tran…

Today 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.…

Say 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 m…

Say 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…

Say 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.…

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 …

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…

Meet 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…

“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'…

When 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 …

Today 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 o…

Say 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 shou…

On 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 …

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 commun…

Meet 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 lif…

Meet 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 …

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 aware…

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-scen…

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 …

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 co…

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 a…

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 mo…

“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 chang…

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 Gas…

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 h…

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 throug…

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…

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 …

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 o…

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. Th…

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 Ly…

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…

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 Gabrie…

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 invol…

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 firs…

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 l…

“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 b…

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 …

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 t…

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…

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 a…

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 conversat…

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 …

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 …

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 i…