Go Shout Love Podcast

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 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.

“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 podcast

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 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.

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 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.

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 shouting love for Elizabeth and Charlotte to raise awareness for their journey with Generalized Myasthenia Gravis and Systemic Autoinflammatory Disease along with financial support for the cost of medical infusions not covered by insurance and research funding for Pediatric Myasthenia Gravis.

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 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.

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.

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 life with Coffin-Siris syndrome. Visit the link in our bio to learn more about Auron’s story.

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 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.

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 #shoutloveforThatcher

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!

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.

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.

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.

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 #shoutloveforRosynandMaddox

“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 #shoutloveforEmmi

Say hello to our friend Elijah! Elijah is a brave, intelligent and loving almost six-year-old from Santa Fe, New Mexico where he lives with his parents, Marissa and Stevan. Elijah loves learning, the ocean, and nature documentaries. Throughout the month of May we’ll be shouting love for Elijah and raising awareness about his journey with Lennox Gastaut Syndrome, Cortical Vision Impairment, and a genetic mutation on the CACNA1E gene.

Today we are talking Lindsey and Jordan who are the parents to little Jack. They graciously invite us into not only their home but their medical journey with jacks diagnosis which comes with a collection of complications that you will hear about along with what life is like with Jack who will be turning 3 years old this month as we shout love for him and his family. He is a calm, sweet and persistent kid who is crushing it! Visit our website at goshout.love to support Jack through the purchase of a t-shirt, hat, sweater, hoodie, tumbler, or other items. Every purchase in April will be used to help cover the costs of Intensive physical therapy programs not covered by insurance.

Meet Nathaniel from St. Louis, Missouri. A Happy and resilient personality who reminds us of how many ways people can have a voice beyond audible speech, and how important it is for everyone to have that right. At Go Shout Love we do amazing things for amazing families with kids on rare medical journeys. Each month we shout love for families through the sale of creative apparel inspired by kiddos like Nathaniel. Every purchase in March will be used to help purchase a bike trailer to allow Nathaniel to go biking with his family. Visit our website at goshout.love to support Nathaniel through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items

Josh and Jessica talk with Stephanie and Rodney, the parents of Sofia, a beautiful 6 year old who has Leukodystrophy and Epilepsy, and is our feature kiddo for this month. At Go Shout Love we do amazing things for amazing families with kids on rare medical journeys. Each month we shout love for families through the sale of creative apparel inspired by the kiddos. This month’s “Known & Loved” t-shirt design is inspired by Sofia, whose loving, warm, and silly personality allowed her to connect deeply with people at a very young age. Every purchase in February will be used to help remodel Sofia’s bedroom and bathroom to be adaptable and accessible. Visit our website at www.goshout.love to support Sofia through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items.