Hi guys. It’s been a minute & I wanted to update you guys (likely mostly just Grandma). I’m at a point in my disease where we have ...

There, There by Tommy Orange (Stunning. I’ll remember it forever.) I’ll Be Gone in the Dark, Michelle McNamara (Worth all the nightmar...

SUP YO I've spent the last 16 days inpatient at NIH. I had a fungal infection that invaded my mouth, esophagus and stomach. So eati...

Since you turned five years old a week ago, I’ve been annoying you by asking the same question over and over. “Hey Sadie,” I’ll start, an...

Good morning. 5:30. I'm awake and here with your daily (ha) NIH update. I'm currently waiting for the blood stick to fully draw me f...

Last week at the National Institutes of Health, my team of doctors met with my parents and me for a wrap-up meeting. It had been an incredib...

Guys! Someone actually paid me to write something.  Check it out here ! insert photo of me looking pleased with myself for finally o...