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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 â 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. -
Say hello to Arlee and Abel!đyou
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, weâll 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. -
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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 doesnât likeâŠand of course his medical journey from day one until now.
Throughout March, weâll be shouting love for Eli to raise awareness for his rare medical journey with 9p24.3 duplication, aspiration/dysphagia, and autism. -
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 Brightonâs brother. He is a funny and intelligent kid and we hope you enjoy listening as much as we enjoyed talking to him.
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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 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. -
Paisley was diagnosed with Neonatal Marfanâs syndrome shortly after birth, a condition occurring at a frequency of 2 to 3 people per 10,000.Paisleyâs 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 Marfanâs 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. -
Today we share the story of a four-year-old girl from Mississippi named Colbi. Colbiâs 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.
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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, weâll be shouting love for Paisley to raise awareness for her rare medical journey with Neurocutaneous Melanocytosis with Hydrocephalus. -
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 âol 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, weâll 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. -
Say high to CarolineđCaroline 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 weâll be shouting love for Caroline to help raise awareness for her rare medical journey with Hypoxic Ischemic Encephalopathy, Cerebral Palsy and Dystonia.
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Todayâs 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 donât really come across often which is a set of twins and only one of them carries the diagnosis. If you havenât 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 moreâŠespecially with an adoring big sister.
This episode is full of stories, insights and loveâŠa lot of love. -
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 donât 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. -
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, weâll be shouting love for the Thomas family and raising awareness for MPS1. Visit www.goshout.love to read about their rare medical journey. -
âOn a cellular level, Kaiâs 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.â 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 Madisonâs elbows were dislocated, her shoulders werenât 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 Childrenâs 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 lookâŠa 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, weâll 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 thumbsWasnât 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, Erinâs 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.
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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, weâll 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 Auronâs story. - Mehr anzeigen
