Stronger Every Day: For Parents of Children with Rare Diseases

Stronger Every Day: For Parents of Children with Rare Diseases

By Bo BigelowHealth & FitnessKids & Family
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Stronger Every Day: For Parents of Children with Rare Diseases episodes

  • SED 385: The Reaction

    On this holiday weekend, something extraordinary happened with our Tess. I wish you coulda seen it.

    Tess's pain threshold is something else. We think it could be part of her genetic disease, Hao-Fountain Syndrome.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    11 min
  • SED 384: Prepping for an Extended Stay

    We head to Germany in a month. We're trying to plan for everything. And there's one potential outcome that has us a bit concerned.

    What would it look like to keep Tess in a hotel room--in Europe, not the US--for a week or more?

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    8 min
  • SED 383: Sleepytime T

    There's not a parent alive who doesn't wistfully talk about the day when their kid used to nap. All the laundry that they used to be able to do, the household chores, et cetera. This week, Tess hit the hay in the middle of the day for the first time in many years.

    What effect does the COVID booster have on our Tess?

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    6 min
  • SED 382: Thanks for Thinking of Me but I Already Have a Job

    If you access the American health care system 40-50 times in a year, you're going to have to deal with some nonsense when it comes to insurance companies.

    Up until recently, I woulda said I'd seen it all. But now our insurance company has created an issue I've never witnessed before. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    13 min
  • SED 381: Decked Out
    Did you know that there are five seasons in Maine? There are. This one, the one after winter and before spring, is called mud season. It's a great time to take Tess shopping for summer clothes.

    Spoiler alert: Tess likes shopping. Still not a fan of waiting rooms, though.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    10 min
  • SED 380: Shhhh
    Let's take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go.

    Où est la bibliothèque?

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    7 min
  • SED 379: Pickles

    I like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar.

    Fun with Tess and hyperphagia.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    7 min
  • SED 378: Tess Has a Passport

    This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row.

    Our trip to Germany is coming up. Number of times Tess has left the United States: 0.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

    8 min
  • SED 377: Four Seven

    We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today--no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much! https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspage

    Tess Army! Who's up for a virtual 5k (walk or run) in the next 2 months? Join my team and help raise money for us. We need to raise funds for our 2022 grant, and YOU can help. Please click to join today! #TessArmy #USP7 https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess

    6 min
  • SED 376: Laugh It Up, Fuzzball

    Let's check in with the T-Bird and our new pup. How goes it so far?

    Tess and Penny are getting to know each other.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

    Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

    6 min

About Stronger Every Day: For Parents of Children with Rare Diseases

From the publisher's feed

This show tells stories about life with Tess, age 15, who has a rare genetic disorder called Hao-Fountain syndrome, Bo Bigelow is Tess's father and primary caretaker. Her disorder causes nonverbal autism, communication disorders, and epilepsy. Bo is an award-winning speaker, writer, filmmaker, and advocate for people with disabilities. He is also a practicing disability-rights attorney.