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
Download on the App Store

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

  • SED 405: Tess and a Friend Conspire

    What is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer.

    An update on life with our new puppy Penny.

    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

    5 min
  • SED 404: We Can Handle an IEP

    It's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP.

    We've been through this a few times now. It helps that we have a dream team.

    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 403: Being Seen

    Gather round. I want to tell you a story about someone who really sees Tess.

    Tess's cousin is deeply interested in helping her.

    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 402: A Food Tess Won't Eat

    Apple picking. It's not just for people who need to get out of the house with their toddlers.

    A fun surprise in the pumpkin patch.

    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 401: Calendar Invites

    Calendar invites. Rare parents get a lot of 'em. And we pretty much have to click yes every single time.

    Mindset is key.

    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 400: Four Hundred

    We've come a long way together, Tess Army.

    Stay tuned through the end of this ep for an incredible surprise from my main man Daniel DeFabio.

    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

    15 min
  • SED 399: Victory in Maine
    Victory. Sometimes it's sweeter when you lose a whole bunch and almost give up hope and then finally prevail in the end. Tess joins her USP7 brothers and sisters in an important venture.

    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 398: Take the Red Pill and See How Deep the Rabbit Hole Goes

    Foundations often start small, with a few parents around a kitchen table. But they grow. And ours is growing now, thanks to a special tool. Do you want to know what the Matrix is?

    This week: I share three major pieces of news, including how to get involved. USP7 patient families, I'm looking at you on this.

    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 397: Camp Dad

    There are no camps. No activities. No more summer school. What can we do in the last weeks of August, before school starts?

    Tess is having herself a dynamite summer.

    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 396: Traveling with Autism Part 2

    Our family just took our first voyage in over three years, to Montreal and Quebec. We learned a ton. And I'm back this week with some more tips about traveling with autism, so you know what worked for us on the road with Tess.

    Part two of two, with tips about what's been helpful for us as we travel with 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

    9 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.