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 455: Bound for Denver
    Heading to Denver this week for the first USP7 conference we've attended in four years. I'll give you a little preview of what we're going to be talking about.
    5 min
  • SED 454: Bubbly

    What if you only had about five words you could use? And you had almost no choice but to use only those five words to get what you wanted?

    8 min
  • SED 453: Amber Turbo

    Think of our foundation as a car. The car is six years old. It has traveled many many miles and been all over the place. And we have just installed a turbo.

    Amber Freed is our foundation's new executive director. You can read her story here.

    9 min
  • SED 452: Anti-Anti-Doping

    If you're a pro athlete in any sport and you take growth hormone in any form, you're gonna get busted. It's considered doping. But here in our house, we give it to Tess every day.

    6 min
  • SED 451: Ritualize Chronic Compassion

    People are always asking me, how can I help you guys in your life with Tess? And honestly, the answer is sorta difficult to formulate. Today I'll explain.

    We need to ritualize chronic compassion. Click here to read Daniel's blog post.

    13 min
  • SED 450: New Beginnings

    The fall semester of school is kicking off for Miss Tess today. She's excited, and so am I. It's a new day.

    My new band is called UNLESS PROVOKED. We like you.

    Unless Provoked website

    Unless Provoked Instagram

    Unless Provoked Facebook

    Unless Provoked YouTube

    Get your t-shirt here.

    8 min
  • SED 449: I Might As Well

    Tess has come a long way through physical therapy. Learning to walk. Loosening her upper body and reaching upwards over time. Going up and down stairs. But there's one thing she just won't do.

    New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.

    My blog about our life with Tess

    More information about Hao-Fountain Syndrome or USP7

    7 min
  • SED 448: Floating

    Tess is out of school for the summer. Let's go do something fun with our girl.

    New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.

    My blog about our life with Tess

    More information about Hao-Fountain Syndrome or USP7

    5 min
  • SED 447: Island Blues

    It is our long-awaited week off in the summer. It's our turn at the island house we share with my wife's siblings. And just about every moment Tess is trying to tell us something very specific.

    New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.

    My blog about our life with Tess

    More information about Hao-Fountain Syndrome or USP7

    8 min
  • SED 446: Traveling While Nonverbal Part 3

    We're concluding our series about travel with our girl. She attends a party, tries to sleep, and at the end of it all gets back in the car.

    New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever.

    My blog about our life with Tess

    More information about Hao-Fountain Syndrome or USP7

    10 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.