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!

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

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.

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.

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 momThroughout 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.

At Go Shout Love we do amazing things for these amazing families with kids on rare medical journeys then check out this month's “Same Storm, Different Boat” design that is inspired by Maddy and Mady. Separated by only 80 miles, these sweet girls are navigating their own unique medical journeys, but have many experiences and battles they share with each other and other kiddos on rare medical journeys. Every purchase in January will be used to help cover the costs of medical and mobility equipment for Maddy and Mady not covered by insurance.Visit our website at goshout.love to support Maddy and Mady through the purchase of a t-shirt, sweater, hoodie, tumbler, or other items.Our next episode will focus on another amazing family and an incredible kiddo. Stay tuned and Go Shout Love.

Go Shout Love is doing amazing things for amazing families with kids on rare medical journeys then check out this month's “Same Storm, Different Boat” design that is inspired by Maddy and Mady. Separated by only 80 miles, these sweet girls are navigating their own unique medical journeys, but have many experiences and battles they share with each other and other kiddos on rare medical journeys. This episode surrounds Maddy M from Wamego, KS. We talk with her parents Megan and Joe about their journey, their family and everything in between.

Welcome back everyone today we are continuing our conversation with Cassie and Taylor the parents to Jensen lee, an 8 year old boy from Ava Missouri who has leukemia.By the time we are posting this episode they will have only known about the diagnosis for about 40 days, so this family is still in the newness of it all with a long journey ahead. This is part 2, so if you haven't listened to part one, pause this and head back to that. Today we get to hear about how Jensen lee himself is doing, how he is handling his treatments and more about his wonderful personality. But it doesn't stop there, both Cassie and Taylor are processing a lot of details and emotions and they are very generous to share that with us today.Connect with Cassie and Taylorhttps://www.facebook.com/cassie.f.wallacehttps://www.facebook.com/taylor.wallace.750Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

Get ready to shout love for Jensen Lee!Jensen is a kind, compassionate, and loving 8-year-old boy who loves dirt bikes, animals, and baseball. He lives in Missouri with his parents, Cassie and Taylor, his older brother, Jack, and younger sister, Charlie.This month's “Brave” t-shirt design is inspired by Jensen and his journey with B-Cell Acute Lymphoblastic Leukemia. Every purchase in November will be used to help cover the costs of travel and housing expenses for Jensen Lee's treatments.We invite you to watch his video, read his story and subscribe to our podcast to listen to a couple conversations with his parents.Get ready to shout love for Jensen Lee!Jensen is a kind, compassionate, and loving 8-year-old boy who loves dirt bikes, animals, and baseball. He lives in Missouri with his parents, Cassie and Taylor, his older brother, Jack, and younger sister, Charlie.This month's “Brave” t-shirt design is inspired by Jensen and his journey with B-Cell Acute Lymphoblastic Leukemia. Every purchase in November will be used to help cover the costs of travel and housing expenses for Jensen Lee's treatments.We invite you to watch his video, read his story and subscribe to our podcast to listen to a couple conversations with his parents.Connect with Cassie and Taylorhttps://www.facebook.com/cassie.f.wallacehttps://www.facebook.com/taylor.wallace.750Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This is part 2 of the conversation surrounding our feature kiddo Gabriel. We are talking with Stephanie and Scott, Gabriels parents. If you haven't listened to part 1 yet, pause this episode and go back. There is a lot of context surrounding Gabriel and his background that will play a lot into this episode as well. Today's episode includes a lot of what is important for this family, including experiences. Living life to its fullest. We really didn't touch on the medical side in part 1, but this episode includes a lot of that journey as well. Gabriel has been through a lot of procedures and is shown how much of a fighter he is.Connect with Stephanie and Scotthttps://www.facebook.com/stephanie.santomangohttps://www.instagram.com/gabriels_gains/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This month we are talking to Scott and Stephanie who are the parents to the always smiling, music loving 5 year old Gabriel.Gabriel has been diagnosed with cerebral palsy and has a number of challenges and therapies that come with that diagnosis. Stephanie and Scot are going to fill us in on all of that. But what they also talk about is how Gabriel initially came into their lives and how the dynamic of their family is forever changed by this incredible little boy's journey through foster placement and how that has lead to including another very important family member, Gabriels foster sister. There are many levels of inclusion layered throughout this entire conversation and we are excited to share that with you.Connect with Stephanie and Scotthttps://www.facebook.com/stephanie.santomangohttps://www.instagram.com/gabriels_gains/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

Cece is our feature kiddo for the month of September 2021 and she has Pitt Hopkins Syndrome. This diagnosis comes with its challenges and that is how this episode starts off, with some of the difficulties and how this family is overcoming some of those. But the journey doesn't begin and end with challenges and difficulties, those are elements involved. But other elements that are also very present are the joys…the positives…the love. Thats what this episode is, it is a great insight to the life of a beautiful little girl like cece. Someone who will brighten your day. This episode also tackles a very big topic of “belonging” and what that really means to families like cece's, but it doesn't stop there. Belonging is for everyone and is something everyone deserves and how we can all have an impact on that.

Welcome to September 2021 as we feature a new family and a new kiddo. This month we are introducing you to Cecily…or Cece as her family affectionally calls her. Cece is a joyful and social 4 yr old who has been diagnosed with Pitt Hopkins syndrome. Today we are talking with Louie and Lizzy who are Cece's parents. There is a lot covered in this first episode, including getting to know the family through two great personalities in Louis and Lizzy. They talk about the journey of discovering the diagnosis and the various kinds of interactions with medical professionals. Some diagnosis are discovered before birth, Pitt-Hopkins is not one of those. Neither are easy, but this what Lizzy and Louie will walk us through. Connect with Louie and Lizzyhttps://www.facebook.com/ElizabethLucyDiNuzzohttps://www.instagram.com/lizzydinuzzo/https://pitthopkins.org/cecilys-smile-squad/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This is part 2 of the conversation with Aaron and Jen, the parents to Jesus our feature kiddo for the month of August 2021We ended the last episode talking about the unique combination and relationship that exists with Jesus and his parents. If you haven't listened to that episode, I would stop this now and go back to part 1 first. It provides a lot of context for what you will hear today.We cover so much with this episode, from the impact Jesus has on this family, the daily life and challenges from his diagnosis and of course his back story, which is very unique to anyone, much less a child on a rare medical journey. This family is summed up as I mentioned before, love, advocacy, inclusion and…to add in… faith, not just for Jesus, but for all of their kids. Connect with Aaron and Jenhttps://www.facebook.com/jennifer.mathews.357https://www.instagram.com/themathewslife/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

“He 110% loves to be held all day long. It's the sweetest thing. We will lay him down, and his eyes pop open and he starts to look around. Once we pick him up, he'll start laughing, because he knows. He continues to change the longer he's been in our home, and I can only pray that as he gets older, he continues to show his preferences about stuff because that was something that was never expected of him. His opinion matters, it matters to all of us. I make sure that it matters to anyone we come into contact with because he needs to be respected like all people should. Whether he can voice it or not, he has preferences.” This month's “Joy is where You Are” design is inspired by Jesus, a cheerful, loving, and sweet two-year-old from Houston, Texas who brings joy to everyone he meets. Every purchase in August will go towards making modifications to the family's van to make travel easier and more comfortable for Jesus. Visit our website at goshout.love to support Jesus through the purchase of a t-shirt, tank-top, hat, tumbler, or other items.Connect with Aaron and Jenhttps://www.facebook.com/jennifer.mathews.357https://www.instagram.com/themathewslife/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This is part 2 of the conversation with Kati and Derek, the parents to Haylee who is our feature kiddo for the month of July. If you haven't listened to part 1 I recommend pausing this and going back one, it provides a lot of context to what we will talk in this episode. That last one was about their medical journey and Haylee's personality. Today we are going to go further into the daily challenges surrounding her diagnosis which includes sleeping at night. Every purchase in July on our website will go towards helping this family purchase a sleep safe bed. Connect with Derek and Katihttp://www.facebook.com/kkennedy915https://www.instagram.com/kennedy_mama3/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

It is a new month and that means a new feature family. Today we are talking with Kati and Derek, the parents to Haylee, a sassy, smart and determined 3 year old girl from Overland Park, KSHaylee has been diagnosed with RYR-1 or also known as Central Core disease.Derek and Kati tell you more about Haylee's medical journey, her diagnosis and what this means for her daily life. There is a lot there to unpack and some details that are unique to Haylee. This is part 1 of two episodes of the conversation with Derek and Kati, it begins with talking about Haylee, her personality, her relationship with her brother and then into her diagnosis. But a large part of this episode centers around being and advocate for Haylee and then ultimately for other kids like Haylee. These parents are great examples of advocacy in the hospital, their son is a great example of being an advocate as a child and a sibling, and then they take it a step further by joining a parent board to speak up for additional kiddos on medical journeys. Connect with Derek and Katihttp://www.facebook.com/kkennedy915https://www.instagram.com/kennedy_mama3/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This episode is Part 2 of the conversation with Aaron and Andrea, the parents to Jaelyn and Reagan who are sisters from Iowa living joyfully with undiagnosed conditions. Jaelyn is a patriotic, silly, and strong eleven-year-old who enjoys music, school, and the color purple. This episode touches on key topics that exist with many families we feature like finding the joy in the small moments and how those can come through the uniquely and constantly present challenges with daily activities and spontaneous moments. There is difficulty working around physical limitation and anxiousness surrounding the unexpected. This is especially hard for people like Andrea who are planners and have had to adapt to a life where planning ahead isn't possible. Connect with Aaron and AndreaIG: www.instagram.com/its.a.butiful.life/FB: https://www.facebook.com/jaelynsjourneyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

Jaelyn and Reagan are sisters from Iowa living joyfully with undiagnosed conditions. Jaelyn is a patriotic, silly, and strong eleven-year-old who enjoys music, school, and the color purple. Reagan is a determined, silly, and shy three-year-old who likes playing outside, books, and baby dolls. Jaelyn and Reagan's journey encourages us to not worry about yesterday or tomorrow, but to stay present in today. They both love playing with their sister five-year-old sister, Shelby. Today's episode centers around Jaelyn's medical journey and how the family has grown and adjusted. Connect with Aaron and AndreaIG: www.instagram.com/its.a.butiful.life/FB: https://www.facebook.com/jaelynsjourneyConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This is part 2 of the conversation with Kelly who is the mother to Avery. Avery is our feature kiddo for the month of May 2021. I would recommend listening to part 1 if you haven’t yet. That episode gives a lot of context for Avery’s medical journey and the background for Kelly and her husband Mark. We ended the last episode talking about conversations, interactions and phrases that cause some separation between families with kinds on rare medical journeys and people who haven’t walked that path. To be clear this is not a place of judgement on people who make comments or say things that are hard to take in for these families. Kelly affirms that in this episode, but this is one major reason we have these conversations, so that we can all learn how to bridge that gap and be more inclusive and together rather than separate.Connect with Mark and Kelly:IG: https://www.instagram.com/twinadventurez/FB: https://www.facebook.com/profile.php?id=100009318677558Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

New month and a new kiddo. This month we are featuring a young boy named Avery. We are talking with his mother Kelly about the medical journey for Avery and what that has meant for their family including Avery's twin sister Emma. This is part one of the conversation with Kelly and one that centers around a very rare diagnosis along with how we can learn from other's reactions and words. Both Mark and Kelly have military background in the Navy. We recorded this at a time when Mark couldn't participate, but we would like to thank both of them for their service and sacrifice as we shout love this month for them. Connect with Mark and Kelly:IG: https://www.instagram.com/twinadventurez/FB: https://www.facebook.com/profile.php?id=100009318677558Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This part 2 episode is all about Mayah’s impact on her school friends, on her family and all who get to meet her. It is a shorter episode, but it does not ease up on quality conversation about an incredible girl and the lessons she is teaching those around her. Connect with Ryan and Angiehttps://www.facebook.com/MiracleMayahConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

Mayah is a happy, captivating and inspiring five year old from Maria Stein, Ohio. She loves her family, school and watching her favorite TV shows. Her beautiful smile and positive attitude bring joy wherever she goes! This episode focuses on Angie and Ryan's medical journey with Mayah and touches on her personality and some insight into how Mayah is impacting the world one person at a time. Connect with Ryan and Angiehttps://www.facebook.com/MiracleMayahConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/

This is part two of the conversation with bob and Lauren the parents to Leo who is our feature kiddo for the month of march. A lot of good content here that is applicable for anyone listening. Bob and Lauren are incredibly easy to listen to and have a lot of poignant things to say about their son and life in general. this episode talks a lot about inclusivity and society. we talk about how to support others during tough times. This is a shorter episode, but there is so much packed in. Connect with Bob and Laurenhttps://www.instagram.com/lauren_nia_lowery/https://www.facebook.com/This-Little-Life-with-Leo-112059770189599Blog: Thislittlelifewithleo.wordpress.comConnect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/