Go Shout Love Podcast

Go Shout Love Podcast

By Go Shout LoveHealth & FitnessKids & Family
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Go Shout Love Podcast episodes

  • 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.
    1 hr 6 min
  • 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.
    14 min
  • 119 - Do Small Things With Great Love - Meet Zachary, Amelia, and Luke
    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.

    51 min
  • 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 podcast


    41 min
  • 116 - Bold and Kind - Meet Madison
    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.

    50 min
  • 115 - Stronger Together - A Closer Look at Myasthenia Gravis
    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.
    53 min
  • 114 - Stronger Together - Meet Elizabeth and Charlotte
    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.
    49 min
  • 113 - Savor the Sweet Life: Meet Rowan
    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.
    44 min
  • 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.
    1 hr 5 min
  • 111 - Stay Curious Part 2 - Meet Auron
    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.



    47 min

About Go Shout Love Podcast

From the publisher's feed

Go Shout Love tells the stories of amazing kids on rare medical journeys and sells creative apparel inspired by the kids to benefit their families. In the GSL podcast, we interview the parents of…