Let's do one final 2021 check-in with our girl, shall we?
Read More#362: Things We Know (about Tess's Language)
What can we know for sure? Are we in a simulation? Is anything real? And what exactly are Tess's abilities with language?
Read More#361: MetroMetroLand
Once upon a time, three men had an idea. It was completely insane. It probably shouldn't have worked at all.
Read More#360: A New Kind of PT
There's one symptom we see often in kids with Hao-Fountain Syndrome. It can cause major issues. And in our house we're trying to do something about it.
Read More#359: Grateful
The forecast: 35 and couch-y. Please join me in some holiday loafing.
Read More#358: Lady Man Club
I felt pretty spoiled last weekend. Because I had some QT with Tess.
Read More#357: Sleepless
I'm feeling rather broken at the moment. And I'm stumped about how to get out of it.
Read More#356: Vaxxed
We've all been feeling it. Time is behaving strangely, no question. But one especially long wait for the T-Bird has finally come to an end.
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#355: That's the Breaks
You know those punch cards? You've seen 'em at your local cafe, maybe, or your favorite sandwich shop. Buy 11 and your 12th one is free? I think we need that for hospital trips.
Read More#354: Uh-huh
I got in fights. In France. Mostly because I was American. So I did my best to blend in.
Read More#353: The Tess Army Gathers
Ninety minutes. A soccer field. And a gathering of some of Tess's greatest champions.
Read More#352: Hello My Friend
One of the hardest things about raising a kid with a rare disease is raising their neurotypical sibling at the same time.
Read More#351: Can't Check the Box If You're Rare
Check the box. Yeah, it's on the form there. Hao-Fountain Syndrome. Should be under H. Oh, it isn't there?
Read More#350: Getting Old
I have these routines with Tess. Things that we do together that always work. Okay, maybe not always.
Read More#349: Take It to the Bank
Taking a major step in moving toward a cure for Hao-Fountain Syndrome. Starting something up that will let us collaborate like never before.
Read More#348: Here Are Your Friends
For us fall is about new beginnings. New school year. New teachers. And new pursuits ahead for our foundation. Let me tell you all about it.
Read More#347: One Hundred
Every month or so, we find an average of two new USP7 patients. And those add up over time. And eventually, there are a lot of patients. How many, you ask? Good question.
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#346: Done-zo
If you've come to hear a cute story about Tess being a sweetie and us learning something new about her as summer ends, well, you've come to the wrong place.
Read More#345: Taking a Tour
We've reached the last days of summer, but we're not quite back to school yet. Let's check in with Miss Tess.
Read More#344: Twenty Percent More Tess
After her seizure last week, we're seeing a different Tess. What does our girl's behavior look like after the seizure?
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