• Home
    • Stronger Every Day
  • About
Menu

Portland Roots Media

  • Home
  • Shows
    • Stronger Every Day
  • About

Podcast   About   Newsletter   Book   Help Us  

Blog

Featured
How Our Rare Disease Community Doubled in 30 Days
Apr 14, 2026
How Our Rare Disease Community Doubled in 30 Days
Apr 14, 2026
Apr 14, 2026
When I Gave My Daughter Four Times Her Seizure Medication
Apr 14, 2026
When I Gave My Daughter Four Times Her Seizure Medication
Apr 14, 2026
Apr 14, 2026
How AI Is Helping Our Rare Disease Foundation Work Toward a Cure
Apr 14, 2026
How AI Is Helping Our Rare Disease Foundation Work Toward a Cure
Apr 14, 2026
Apr 14, 2026
When My Daughter With a Rare Disease Watched Her First Full Movie
Apr 14, 2026
When My Daughter With a Rare Disease Watched Her First Full Movie
Apr 14, 2026
Apr 14, 2026
Why Every Rare Disease Family Needs to Share Their Data
Apr 14, 2026
Why Every Rare Disease Family Needs to Share Their Data
Apr 14, 2026
Apr 14, 2026
From IEP Goals to a Coffee Cart: My Daughter's Path to Job Training
Apr 14, 2026
From IEP Goals to a Coffee Cart: My Daughter's Path to Job Training
Apr 14, 2026
Apr 14, 2026
A Barium Swallow, a Brave Girl, and the Power of Talking Her Through It
Apr 14, 2026
A Barium Swallow, a Brave Girl, and the Power of Talking Her Through It
Apr 14, 2026
Apr 14, 2026
The Invisible Balancing Act of Post-Seizure Medication Management
Apr 14, 2026
The Invisible Balancing Act of Post-Seizure Medication Management
Apr 14, 2026
Apr 14, 2026
The One Thing Rare Disease Families Can Do Right Now to Help Find a Cure
Apr 14, 2026
The One Thing Rare Disease Families Can Do Right Now to Help Find a Cure
Apr 14, 2026
Apr 14, 2026
A Get-Well Card, a Sit-Ski, and the Resilience That Amazes Us
Apr 14, 2026
A Get-Well Card, a Sit-Ski, and the Resilience That Amazes Us
Apr 14, 2026
Apr 14, 2026
This Ain't Gonna Happen Without You
Jan 24, 2024
This Ain't Gonna Happen Without You
Jan 24, 2024

Psst! Hey. You. Yeah. I'm talking to you. Can you help me? 

Jan 24, 2024
Screen Shot 2023-02-28 at 11.46.49 AM.png
Feb 28, 2023
Top 5 Most Listened-To Episodes of Stronger Every Day
Feb 28, 2023
Feb 28, 2023
Snort and Other Languages
Jan 19, 2022
Snort and Other Languages
Jan 19, 2022

Our convos with Tess tend to be short. Usually they end after one word. But today was different.

Jan 19, 2022
Day One
Apr 6, 2021
Day One
Apr 6, 2021

I have a thrilling announcement that I've been waiting for months and years to share with you. At long last, after many false starts, it's go time.

Apr 6, 2021
Tess has intellectual disability. Here's what it means for her, how we measure it, and what we're working on now.
Nov 1, 2020
Tess has intellectual disability. Here's what it means for her, how we measure it, and what we're working on now.
Nov 1, 2020

What does Tess’s intellectual disability diagnosis mean?

Nov 1, 2020
Included - Part 4 of 4
Mar 14, 2020
Included - Part 4 of 4
Mar 14, 2020

Friends. Where would we be without them? And where would Tess be?

Mar 14, 2020
Included - Part 3 of 4
Mar 14, 2020
Included - Part 3 of 4
Mar 14, 2020

Tess couldn't be more different from her classmates in her learning style and what she's working on. But socially, she's a lot like them.

Mar 14, 2020
Included - Part 2 of 4
Mar 14, 2020
Included - Part 2 of 4
Mar 14, 2020

Included. Tess with her classmates, as much as possible. That's what we want to see.

Mar 14, 2020
Included - Part 1 of 4
Mar 14, 2020
Included - Part 1 of 4
Mar 14, 2020

Tess's education has been super solid for a long time. But recently we realized something that made us want to look a bit deeper into what she does all day at school

Mar 14, 2020
Tess is nonverbal, with a speech disorder, autism, and other issues. Here's how we're trying to help her.
Dec 14, 2019
Tess is nonverbal, with a speech disorder, autism, and other issues. Here's how we're trying to help her.
Dec 14, 2019

Helping Tess communicate.

Dec 14, 2019
Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder.
Sep 27, 2019
Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder.
Sep 27, 2019

Almost immediately, Tess began to emerge.

Sep 27, 2019
IMG_0120.jpg
Jun 25, 2019
Tess in a Tiny Room
Jun 25, 2019
Jun 25, 2019
What's Next
Nov 27, 2018
What's Next
Nov 27, 2018

We met our goal of funding the phenotyping study. So what now?

Nov 27, 2018
Catch Up with Tess
Nov 15, 2018
Catch Up with Tess
Nov 15, 2018

The essential six podcast episodes, with links and everything.

Nov 15, 2018
Ignore Her At Your Own Peril
Aug 20, 2018
Ignore Her At Your Own Peril
Aug 20, 2018

THE last thing you want to do in our house if things are going well, is to mention that they are going well.

Aug 20, 2018
Our Greatest Fear
Aug 2, 2018
Our Greatest Fear
Aug 2, 2018

On the morning of Friday, July 13th, Tess wakes us up. She does this with a cry, as she often does, but this one is different.

Aug 2, 2018
Screen Shot 2018-04-11 at 2.00.31 PM.png
Apr 7, 2018
At Last
Apr 7, 2018
Apr 7, 2018
Meeting Others Like Tess
May 21, 2017
Meeting Others Like Tess
May 21, 2017

We've been waiting for almost Tess's entire life to meet someone like her, to meet a family like ours. And it finally happened. 

May 21, 2017
Scars
May 9, 2017
Scars
May 9, 2017

It's part of life, at least for us, that we take Tess to the doctor. A lot. She's generally a pretty healthy gal. Not many sicknesses, like coughs or colds. Just a ton of stuff that we have to figure out. Like why her hips don't work. Or why she hasn't grown an inch in about a year. 

May 9, 2017
An Exit Interview from the Toughest Job
Jan 20, 2017
An Exit Interview from the Toughest Job
Jan 20, 2017

Recently Kendra left that preschool. When you leave, they do an exit interview. And one of the questions was, what has been your greatest accomplishment during your time at this preschool? Kendra had a one-word answer:  She said Tess. 

Jan 20, 2017

Get the Stronger Every Day newsletter

Sign up with your email address to receive news and updates.

We respect your privacy. No spam, no sharing your info. Seriously. This whole thing is just Bo with a laptop, pretty much. 

Thanks for signing up to follow Tess's journey!

About

In 2010, I quit my law job to be at home with my kids. Turns out our daughter Tess has disabilities. She’s different. And now so is everything else.

Tess has an ultra-rare disease. It took us years to figure out what it was.

Read about that story here.

Her disease is a mutation of a gene called USP7. Because of it, she’s nonverbal, has autism and epilepsy, and is cognitively years behind her peers.

This blog and podcast are about our journey with her.

If you’re new to the podcast, and aren’t sure where to begin, start with these six essential episodes.