Stronger Every Day: For Parents of Children with Rare Diseases

Over the years, we've learned about what works when we travel with Tess. We're still learning. She shows us new ideas all the time. And this voyage is no exception.

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

Along the highways and byways, there are quagmires wherever you look. The filthy bathroom in Hampton, New Hampshire. The police speed trap in Chicopee, Mass. And heck, there's an entire stretch of over 130 miles that couldn't be less friendly to our Tess.

Our journey to upstate New York begins.

Rest stops between Portland, ME and Skaneateles, NY

On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too: https://www.portlandrootsmedia.com/eagleeye

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

It's 448 miles to Syracuse, we got a full tank of gas, half a pack of Larabars, it's dark...and we're wearing sunglasses. Hit it.

What's the difference between a trip and a vacation? And which one will this voyage be?

On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too. https://www.portlandrootsmedia.com/eagleeye

This episode is decaffeinated, much to our chagrin. And a small creature will make an appearance.

ICYMI: last week's episode, SED 441, "Tess's Power Plant," is available here.

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

With five minutes before go time, Tess makes a move. And all hell breaks loose.

On the road with the lad. A special trip that I took this week.

Tess is ready to eat. I don't know what time it is, but that statement is true regardless of day or time.

Check out my blog post about Tess's diet: "Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder."

Tess's hyperphagia makes an appearance at a birthday party. No zone or man-to-man defense can stop her.

Certain items have meaning for Tess. They are positively loaded with meaning, so much so that they're like full paragraphs for her.

Checking in with Tess and communication.

You unfortunately hear from time to time about bullying in schools. But one thing you don't hear enough about are the anti-bullies. The people working, day after day, to prevent bullying.

The Cromwell Center of Maine is doing super important work.

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 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