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 415: Have Sequins, Will Travel

    The mud room. It's our point of departure when we leave our house. And in that room, post-Christmas, Tess unleashes a neat-o surprise.

    Tess knows.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

    5 min
  • SED 414: Fidget

    Certain handheld objects give Tess a sense of peace. They keep her from getting bored.

    The wonderful world of fidgets. Where can I get more of these?

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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 413: Germany Part 3

    The phenotyping study begins for our girl in Germany. How does Miss Tess do?

    Wrapping up a three-part series about our recent trip. I share tips and tricks! #TravelingWithAutism

    Special shout-out to Gretchen McCulloch and Lauren Gawne, hosts of the great linguistics podcast Lingthusiasm, which totally saved me while I was in the hospital with Tess.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

    14 min
  • SED 412: Germany Part 2

    We explore Heidelberg, getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else.

    More about our recent trip to Germany for the USP7 phenotyping study. #TravelingWithAutism

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

    15 min
  • SED 411: Germany Part 1

    Tess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study.

    Two words: Jet. Lag.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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

    16 min
  • SED 410: A Crucial Waypoint

    Germany, take two. Let's go see Dr. Schaaf.

    Let's try this again.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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 409: Evaluation Exasperation

    Evaluations. They're a huge part of our life with Tess. They aren't really fun.

    If you're doing a questionnaire about your kid--to get services, Medicaid, IEP stuff--I'm with you.

    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

    9 min
  • SED 408: Thirteen

    We have a birthday girl in the house. This week, Tess turns the big one-three.

    It's been quite a ride so far with this gal.

    Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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 407: Tess Clams Up
    Tess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely. What does it mean when Tess is quiet?

    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

    9 min
  • SED 406: Bat-Signal Answered

    A call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers.

    Solving the toothbrush conundrum.

    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

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.