Go Shout Love Podcast

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...

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 challenges posed by a rare condition called Friedrei...

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 medical journey from day one until now.  Throughout M...

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 is a funny and intelligent kid and we hope you enjo...

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 diagnosed with Leigh Syndrome, a rare mitochondrial di...

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 transfer to a different hospital, where the diagnosis...

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 medical journey with Neurocutaneous Melanocytosis w...

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 3 copies of chromosome 18 instead of 2. Throughou...

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 day to day life. Sebastian has 2 siblings, Lila wh...

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 tra...

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 p...

“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 lates...

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 flat...

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 to...

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 awa...

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...

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 Januar...

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 ou...

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...

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 Rhizomeli...

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 contact...

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...

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...