Bo Bigelow

Stronger Every Day: For Parents of Children with Rare Diseases

Kids EN ↓ 605 episodes

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.

Author

Bo Bigelow

Episodes

SED 574: The Woods 13.01.2026 7:16

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility.

SED 573: Into the Woods 07.01.2026 9:10

This week, Tess has a life-threatening event, at a time when we're very far from the closest medical facility.

SED 572: Holiday Break 30.12.2025 2:28

This week, we're away on a ski vacation as a family. Let's check in with Tess.

SED 571: Waiting 24.12.2025 4:01

This week, we're on pins and needles, waiting for a very special milestone.

SED 570: Still Ill 16.12.2025 5:22

This week, the illness continues, believe it or not. We'll check in on our girl.

SED 569: The Cup Is Already Broken 09.12.2025 6:36

This week, someone in our house is considerably under the weather.

SED 568: Never Get a Car from GM and Other True Stories 02.12.2025 9:22

This week, got a few fun stories for ya. Vignettes, if you will.

SED 567: Thankful for Empatica and the Epimonitor 25.11.2025 3:58

This week, a nifty tech device gets strapped to Tess's wrist.

SED 566: Riding the Waves of Life 18.11.2025 5:05

This week, an emerging artist in Maine works with multiple media and begins an exhibition at a local gallery.

SED 565: Backseat Driver 11.11.2025 8:26

This week, in the backseat of a car in Maine, someone had something to say.

SED 564: Sixteen 05.11.2025 8:36

This week, this very day in fact, Tess is celebrating a special birthday. This is sixteen.

SED 563: Tess the Freshman 28.10.2025 8:42

This week, we're talking about Tess's high school experience. She's been a freshman for about 8 weeks now, so I'll tell you how it's been for her so far.

SED 562: The Big Four 21.10.2025 11:57

There are four little things you can do as a Hao-Fountain patient to move things forward in a huge way. I'm gonna tell you how these 4 went for Tess and why it matters.

SED 561: We Interrupt this Party to Bring You A Special Bulletin 14.10.2025 9:21

Tess wanted something recently, and she used all her abilities to let me know what it was.

SED 560: Up the Hearts 07.10.2025 6:06

We took Tess on a special outing, somewhere she'd never been before.

SED 559: Nashville Part 2 of 2 30.09.2025 16:50

It's that time of year, and we just held our annual Hao-Fountain conference. Hao-Fountain patients and families: please SIGN UP for our October 2nd Zoom about MATRIX, where we can help you sign up for Matrix and answer your questions. Sign up here: https://usp7.salsalabs.org/ MatrixSignupandQA

SED 558: Nashville Part 1 of 2 23.09.2025 8:11

It's that time of year, and we just held our annual Hao-Fountain conference.

SED 557: Social Eyes 15.09.2025 6:06

Tess got invited to a birthday party and she was pleased as punch.

SED 556: Tess in the ER and ICU - Part 2 of 2 09.09.2025 13:13

Recently Tess had a seizure and went to the ER, so I want to tell you more about it.

SED 555: Tess in the ER and ICU 02.09.2025 9:43

Recently Tess had a seizure and went to the ER, so I want to tell you about it.

SED 554: Coffee Break 27.08.2025 7:47

Today I'll be telling you the second part of our recent trip to Syracuse.

SED 553: Find a Way to Entertain Yourself 19.08.2025 6:58

Today I'll be telling you the first part of our recent trip to Syracuse.

SED 552: Where to Go 09.08.2025 4:27

Today I'll be telling you about some locations that Tess enjoys.

SED 551: The Tess Schedule 05.08.2025 10:32

Today I'll be telling you about Tess's schedule on a typical day. I wrote about Tess's special diet on my blog here and made a two-part Stronger Every Day podcast episode you can find here and here .

SED 550: Radar 29.07.2025 8:05

Today I'll be sharing about a certain radar that Tess likes to use.