Sign up to save your podcasts
Or
Share Stronger Every Day: For Parents of Children with Rare Diseases
Share to email
Share to Facebook
Share to X
Share to email
Share to Facebook
Share to X
Or
Stronger Every Day: For Parents of Children with Rare Diseases
Stronger Every Day: For Parents of Children with Rare Diseases episodes
- SED 485: Costa Rica - Part 2
More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.
8 min - SED 484: Costa Rica - Part 1
It's time. It's time to take Tess out of the United States and into another country.
15 min - SED 483: I Can Do It, I Know How
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.
5 min - SED 482: Eclipse
A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?
9 min - SED 481: A Massive Piece of the Quest for a CureYou'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. Buzzy - personal vibrating ice pack for easier shots for kids. Order on Amazon here.10 min
- SED 480: Thirteen Gallons of Milk
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.
7 min - SED 479: Banquet
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.
8 min - SED 478: Sunday Bloody Sunday
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.
7 min - SED 477: ET and Elliott
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.
5 min - SED 476: Breathe
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: [email protected]
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.
Bo is a co-founder of DISORDER: The Rare Disease Film Festival and The Disorder Channel.
Over the years, he's told Tess's story to NPR, NBC News, ABC News, The Washington Post, and The Atlantic.