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 allowing us into their lives and sharing Ellie's story – 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!👋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 Friedreich's Ataxia.Throughout April, we’ll 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.

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 March, we’ll 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 Brighton’s brother. He is a funny and intelligent kid and we hope you enjoy listening as much as we enjoyed talking to him.

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 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 unfolded. Neonatal Marfan’s 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. 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 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 ‘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.Throughout the month of September, we’ll 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 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.