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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
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If you're trying to cure a rare disease, there are two tools that you can't live without.
It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.
I want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.
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.
Tess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something.If you're from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout: bo.bigelow@gmail.com
If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.
I have aged. Since the last time we were together, I've passed the half-century mark. And I have a few thoughts for ya.
Come spend a day on a snowy peak here in Maine. Come watch our Tess as she puts on her ski coat and hits the slopes once again.
We're basketball fanatics in our house. And when I say we, I'm including Tess.
Psst! Hey. You. Yeah. I'm talking to you. Can you help me? Why, and how, we need your help to keep the foundation and our mission afloat. Where to send people to donate: usp7.org/donate
Seven men. On foot over 183 miles total. Nearly 300 kilometers. Deep in the heart of Texas.This marathon was to raise money for Hao-Fountain research. Thanks to all of you who've generously supported us so far. In case you haven't had a chance to donate yet, here's where you can do that: https://bit.ly/3vGHHIy
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