I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism
Reading the feed…
This week, Tess's bones have posed some problems in the past. Are they out of whack again?
This week, our crew is just back from vacation and as usual Tess had a surprise for us.
This week, perhaps you've wondered in a big-picture kind of sense why we are here. Well, Tess has some ideas about that.
This week, if you stop breathing multiple times during the night, that's actually not good for you.
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 going to 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.
