Stronger Every Day Bo Bigelow
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- Para toda la familia
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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#491: Three Little Letters
If you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.
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#490: Crunch
I'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.
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#489: Becoming an APS - Two Rare-Disease Tools I Can't Live Without
If you're trying to cure a rare disease, there are two tools that you can't live without.
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#488: The Cloak of Ban D'aid
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.
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#487: Nate the Ultra-Fantastic
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.
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#486: Trampopoline
To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.