Stronger Every Day: For Parents of Children with Rare Diseases

This week, Tess heads to the hospital for an upper endoscopy, breakfast not included.

This week, let's check in on our girl Tess as our summer continues and we search for fun things to do.

This week, we're trying to get home from Puerto Rico, where Tess has had a seizure.

This week, we're in Puerto Rico, where Tess has had a seizure and ambulance ride.

This week, we are in Fajardo, Puerto Rico, where Tess meets a friend while wading in a shallow pool, and they both seem to know something that we don't.

This week, the aftermath of Tess's medical event at school.

This week, another close call with Tess, this time at school.

This week, detectives are on the case. What happens when the obvious answer to a mystery turns out to be wrong?

This week, what if there could be a one stop shop for medicine?

This week, Tess participates in a meeting about her future and shares her thoughts at a critical juncture.

This week, summer lasts about three months and Tess has summer school for 18 days of it.

This week, there's a bakery inside your body, and Tess's bakery has a staffing problem.

This week, a mysterious hitch in Tess's step has us thinking of a rough time from long ago. 

This week, the long-awaited part two about Tess's IEP for this year.

This week, Tess goes somewhere she hasn't been in many years, a place we've avoided for a very good reason.

This week, I called, you answered. An update on Project Centauri, our effort to get 100 new families on Matrix.

This week, a critical mistake lands Tess back in the emergency room.

This week, I want to tell you about how I'm using AI to help with our foundation's work in our quest for a cure or treatment for Hao-Fountain syndrome. 

This week, we're delighted as Tess expands her video library into uncharted territory.

This week, we're launching a new initiative that's gonna make our Hao-Fountain crew a million times stronger. 

This week, it's an earth metal, a chemical element, a thing you can use when making fireworks. And hey, maybe we should drink it.

This week, the three letters that have often invoked dread in many a parent are instead making me feel positively gleeful about our girl. 

This week, we're working hard to manage some new factors in Tess's life.

This week, we know what we need in order to get to a cure or treatment for Hao-Fountain syndrome. And you can help. Get started with Matrix:  https://usp7x.acrossmatrix.com/en-US/#/user-request

This week, a couple fun updates about Tess's re-entry after her seizure.

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 5 of 5.

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 4 of 5.

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 3 of 5. 

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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

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

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 

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

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

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

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

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

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