Tuberous Sclerosis Complex (TSC): Finding Strength Through Vulnerability
Inside the Children's Hospital
Release Date: 08/20/2025
Inside the Children's Hospital
What does it look like when life changes in an instant—and a family learns to navigate the unimaginable? In this episode of Inside the Children’s Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail’s journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs. As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on...
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What happens when your child seems sick, but everything keeps coming back normal? For a lot of parents, the scariest part isn’t the diagnosis. It’s the not knowing. It’s being told everything looks fine when your gut is telling you something is off. This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast. Kaylee shares what it was like trying to make sense...
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What happens when your child already senses something life-changing—before anyone has found the words to say it out loud? When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all. This week, Katie sits down with Anna Lonon, founder of to share her family’s story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and...
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What happens when your instincts tell you something is wrong—but you’re dismissed again and again? For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers. This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis. Nikki shares what those...
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Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury. In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family’s journey following a diagnosis of hypoxic ischemic encephalopathy (HIE). What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child. Brady opens up about: The shock and uncertainty of those early days Navigating life as a “medical dad.” The...
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How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges. This week’s guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it’s really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child’s care team. If...
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What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it’s often just the beginning. This week’s guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James’s medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family. Lyndsey and Katie reflect on the intense months surrounding transplant surgery,...
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This week’s guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family’s Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief. She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced....
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What happens when your child shares something that shifts the future you thought you understood? In this episode of Inside the Children’s Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender. Kelly shares: The phone call that changed everything Navigating substance use and mental health concerns Grieving privately while choosing love publicly Rebuilding trust with her...
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How do you help a child respond when someone asks about a scar, burn, or limb difference? This week’s guest, Abby Horton, opens up about her journey as a Child Life Specialist working across ICU, burn, surgical, rehab, and inpatient settings—and how those experiences shaped the way she supports families navigating physical differences. From sudden trauma and accidents to limb differences, burn injuries, surgical scars, and hair loss from chemotherapy, Abby shares how parents can gently empower their children to own their story with confidence. She and Katie discuss simple, age-appropriate...
info_outlineTuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women’s health coach and mom of four, Erin Trier, shares her family’s eight-year journey to finally receiving a TSC diagnosis for her son, Brendan.
She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why self-care, community connection, and support are essential for parents raising a medically complex child. You will not want to miss this episode.
Resources Mentioned: Erin’s website: www.erintrier.com Instagram
Podcast: Empowered in Health
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Keywords: Tuberous Sclerosis Complex, TSC diagnosis story, rare genetic disorder, seizure disorder, epilepsy in children, autism parenting, medically complex child, women’s health coach, parenting tips, self-care for parents, family organization, SupportSpot app, parent mental health, coping strategies, special needs parenting, rare disease awareness.
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