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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Turning the Tables: How to Face Evaluations and Advocate for Your Child
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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
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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
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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
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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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Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting
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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
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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
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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
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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
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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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Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe
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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
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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
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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
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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
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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
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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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Quick update about Miss Tess and her adventures at summer camp.By Bo Bigelow
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Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself -- Part 2 of 2
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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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Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself
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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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How to Get an Autism Spectrum Diagnosis and Why It Matters More Than Ever
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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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Special Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 2 of 2
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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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Special Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 1 of 2
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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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I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl? Shout-out to Special Surfers, a non-profit organization sharing the empowering experience of surfing with children and adults with special needs of all diagnoses. specialsurfer.orgBy Bo Bigelow
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One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.By Bo Bigelow
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Taking some time this week to reflect on community. The one we've built and continue to build, and what it means for Tess and our family.By Bo Bigelow
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If you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.By Bo Bigelow
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I'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.By Bo Bigelow
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#489: Becoming an APS - Two Rare-Disease Tools I Can't Live Without
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If you're trying to cure a rare disease, there are two tools that you can't live without.By Bo Bigelow
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It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.By Bo Bigelow
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I want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.By Bo Bigelow
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To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.By Bo Bigelow
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More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.By Bo Bigelow
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It's time. It's time to take Tess out of the United States and into another country. A huge thank you to Luis and Robert from The Springs Resort in Arenal.By Bo Bigelow
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We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.By Bo Bigelow
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A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?By Bo Bigelow
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#481: A Massive Piece of the Quest for a Cure
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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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I always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day.By Bo Bigelow
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Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.By Bo Bigelow
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Sometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.By Bo Bigelow
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Tess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982.By Bo Bigelow
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Tess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something. If you're from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout: bo.bigelow@gmail.comBy Bo Bigelow
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If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.By Bo Bigelow
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I have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.By Bo Bigelow
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Come spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.By Bo Bigelow
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We're basketball fanatics in our house. And when I say we, I'm including Tess.By Bo Bigelow
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Psst! Hey. You. Yeah. I'm talking to you. Can you help me? Why, and how, we need your help to keep the foundation and our mission afloat. Where to send people to donate: usp7.org/donateBy Bo Bigelow
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Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas. This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that: https://bit.ly/3vGHHIy…
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An invitation from across the Atlantic. And a return after many years to a city west of here. The city where it all began.By Bo Bigelow
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