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?
Read More#343: Tess in the ER, Redux
Tess hasn't had a seizure in over three years. Until this week.
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#342: The Big Kid
In spite of how we sometimes feel frozen in time, we're kind of flabbergasted to realize that Tess will enter sixth grade this fall.
Read More#341: No Thanks, Olympics
The Olympics. The stories of the athletes and how they got there. Their families rooting them on. The medal ceremonies, the whole deal. Everyone loves the Olympics. Well, maybe not everyone.
Read More#340: Back in the Saddle
I return to one of my favorite places in Portland. And I get a troubling text about Tess.
Read More#339: The Hour
A fresh pot of coffee. The sun is coming up. I'm about to sit down for an uninterrupted hour of solid work. And then, it gets interrupted.
Read More#338: Take a Dip
Tess thrives on routine. Places she knows well. So when we take her on the road, there's one thing that she reliably responds to.
Read More#337: The John Wilson Pyles Memorial Award
A sunny June day in Maine. A parade of 11 and 12 year olds. Tess mixing it up, in line with everyone else. And a special award, just for her.
Read More#336: There Are No Days Off
Grit. It's a quality that kids need in order to make things happen in their lives. But of course, you can't teach it.
Read More#335: This Is Gonna Cost Ya - Part 2 of 2
You're at work. Can't focus. Need a coffee. Just drank a full cup, still can't focus. What exactly is your deal, man?
Read More#334: This Is Gonna Cost Ya - Part 1 of 2
Ever try to do a big math problem on an old-school calculator? You type in a bunch of huge numbers and multiply them, and you get that weird E off to the side? Yeah.
Read More#333: Astute Traveler
It's valuable to take a little break from travel and then see what you notice. This week, we took Tess across state lines. What we saw was fascinating.
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