Stronger Every Day: For Parents of Children with Rare Diseases

Victory . Sometimes it's sweeter when you lose a whole bunch and almost give up hope and then finally prevail in the end.              Tess joins her USP7 brothers and sisters in an important venture.    Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this po...

Foundations often start small, with a few parents around a kitchen table. But they grow. And ours is growing now , thanks to a special tool . Do you want to know what the Matrix is? This week:  I share three major pieces of news , including how to get involved. USP7 patient families , I'm looking at you on this.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare dise...

There are no camps . No activities. No more summer school. What can we do in the last weeks of August, before school starts? Tess is having herself a dynamite summer . Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast . Available for free right now...

Our family just took our first voyage in over three years, to Montreal and Quebec. We learned a ton . And I'm back this week with some more tips about traveling with autism, so you know what worked for us on the road with Tess. Part two of two, with tips about what's been helpful for us as we travel with our Tess. Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare dis...

Our family just took our first big trip in over three years, to Montreal and Quebec. We learned a lot. And I'm gonna give you some tips about traveling with autism , so you know what worked for us with our Tess. Tess did great on this voyage.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles ,...

You may know that Tess didn't walk until she was five . She wore orthotics, or braces, for years. And now, at age 12, she's back in braces . Working on helping Tess walk better .  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for fre...

We play a lot of music in our house. In the kitchen, in the car, wherever. Tess is making her opinions known about certain tunes. What are Tess's current fave songs ? Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now o...

Happy to tell you this week about the next phase of our search for a cure or treatment for Hao-Fountain Syndrome. You, Tess Army, are helping us, and we're grateful.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on...

This week, we say goodbye to a dear member of our family. When is a service dog not a service dog?  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities . Over 100 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 sto...

Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball .  A large disappointment , but many many silver linings .  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles , including a fe...

It comes around every year. At the very beginning of summer, and also at the end. It strikes fear into the hearts of parents everywhere. The blank space in the calendar . What can Tess do when she's not in school ?  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities . Over 100 film and video titles, including a few video version...

The weather in Maine has been all over the place lately. One day it's in the 80s, next day you're putting on a fleece vest and wool socks. Let me tell you about some quality time I had with Tess one rainy day recently. Kick off your shoes for a minute and watch the rain with Tess and me.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of d...

Does the word travel instill fear in you? Do you wish you could benefit from the brilliance of others who have hacks for traveling? If so, you're in luck. This week, more travel hacks for ya. More tips for your voyages. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video vers...

Travel. Remember that? Been a while since we went anywhere, but I have some favorite hacks that have helped our family in voyages past, and I'd love to share them with you.  Skip. The. Line.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Availa...

On this holiday weekend, something extraordinary happened with our Tess. I wish you coulda seen it.  Tess's pain threshold is something else. We think it could be part of her genetic disease, Hao-Fountain Syndrome.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions...

We head to Germany in a month. We're trying to plan for everything. And there's one potential outcome that has us a bit concerned. What would it look like to keep Tess in a hotel room --in Europe, not the US--for a week or more? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities . Over 100 film and video titles, including a few...

There's not a parent alive who doesn't wistfully talk about the day when their kid used to nap. All the laundry that they used to be able to do, the household chores, et cetera. This week, Tess hit the hay in the middle of the day for the first time in many years.  What effect does the COVID booster have on our Tess?  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare...

If you access the American health care system 40-50 times in a year , you're going to have to deal with some nonsense when it comes to insurance companies. Up until recently, I woulda said I'd seen it all. But now our insurance company has created an issue I've never witnessed before.      Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of...

Did you know that there are five seasons in Maine? There are. This one, the one after winter and before spring, is called mud season . It's a great time to take Tess shopping for summer clothes .  Spoiler alert: Tess likes shopping . Still not a fan of waiting rooms, though.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities....

Let's take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go. Où est la bibliothèque?  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities . Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV....

I like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar. Fun with Tess and hyperphagia.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku...

This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row. Our trip to Germany is coming up. Number of times Tess has left the United States:  0.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. O...

We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today --no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much! https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtess...

Let's check in with the T-Bird and our new pup. How goes it so far? Tess and Penny are getting to know each other .  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities . Over 100 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. T...

Someone new has joined our family. She's about ankle height, has boundless energy, and is slowly making friends with Tess. Tess loves dogs. Well, maybe not all dogs.  Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities . Over 100 film and video titles, including a few video versions of this podcast. Available for free right now o...