Bo Bigelow public
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I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism
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show series
 
Turning the Tables: How to Face Evaluations and Advocate for Your Child How do you handle evaluations when every question feels like a punch to the gut, and the evaluators hold all the power over your child's future? If you're a parent of a child with a rare disease, evaluations can feel like a never-ending series of heartbreaks and hurdles—whether…
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Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home Feeling burned out as a caregiver? What if the simple act of leaving your house could be the key to restoring your energy and creating meaningful connections? If you’re juggling endless tasks like medical appointments, therapy sessions, and daily care for your child wit…
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Filling Your Bucket: Stress-Free Holidays for Rare Disease Families Are the holidays leaving you feeling drained instead of joyful? For parents of children with rare diseases, the holiday season often amplifies stress, disrupts routines, and makes it hard to enjoy quality time. This episode tackles these challenges head-on, offering actionable tips…
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Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication What happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive? In this episode, we explore Tess’s journey with ADHD, rare disease, and her unexpected reaction to a new medication—highlighting the complex realities o…
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SED 514: Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting What would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus? In this episode, we dive into Tess’s journey with anxiety, impulsivity, and executive function challenges—i…
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Breaking Through Isolation: Finding Connection as a Rare Disease Parent Have you ever felt isolated, like no one around you understands the unique struggles you're facing? For parents of children with rare diseases, this feeling can be a daily reality. In this episode, you'll learn how to break through the walls of isolation that can accompany rais…
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Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents Ever feel like you’re running on empty, with no time to refuel? What if you could recharge without needing hours to yourself? As a parent of a child with a rare disease, you’re constantly on the go, but neglecting self-care can leave you feeling drained and unable to give yo…
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Building Your Child's Dream Team: Navigating Therapies for Rare Diseases Are you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease? In this episode, we’ll discuss practical solutions to the complex challenges parents of children with rare disorders face, from managing occupational,…
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Stronger Together: Aligning with Your Partner on the Rare Disease Journey Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page? This episode dives into a common but unspoken challenge many parents face: navigating a complex healthcare journey with your partn…
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Have you ever struggled to find the right tech tools to help your neurodiverse child? Managing the complex needs of a child with a rare disorder can feel overwhelming, especially when it comes to communication. This episode dives into the use of technology to simplify your life, helping your child express themselves and soothe during sensory overlo…
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Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overw…
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Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overw…
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Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2 Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions? For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema…
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Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2 Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health? As a parent of a child with a rare genetic disorder, you’ve likely faced numerous challenges in managing their symptoms. This episo…
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From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection? If you've ever felt uncomfortable or angry when strangers or even loved ones don’t know how to interact with …
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Eight Tools to Get Organized and Run Your Household Better Are you looking to get organized and level up your productivity? With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for …
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Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease? This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or g…
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How could you change your mindset about taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others. 1. Enlist two types of co-pilots for visits to make sure you…
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Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely …
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Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism? Navigating the challenges of parenting or caregiving can be overwhelming, especially when it comes to understanding and addressing potential developmental disorders like autism. This episode explores how to identify signs o…
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Have you ever felt like navigating insurance claims for your child with disabilities is a full-time job? As a parent or caregiver of a child with disabilities, you’re likely dealing with an overwhelming number of medical appointments and insurance claims. This episode addresses how you can simplify this process and ensure you get the coverage you d…
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Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode (part 2 of 2) dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey…
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Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you’re seeking ways to better support your child’s educational journey and ensure th…
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You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients. If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com. Bu…
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