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To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.
More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.
It's time. It's time to take Tess out of the United States and into another country.
A huge thank you to Luis and Robert from The Springs Resort in Arenal.
We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.
A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?
You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients.
If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com.
Buzzy - personal vibrating ice pack for easier shots for kids. Order on Amazon here.
I always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day.
Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.
Sometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.
Tess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982.
From the publisher's feed
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…