4 sisters diagnosed with same rare condition

And our kids are like, right now, they're 19. One turns 18 this weekend. 12, 9--

6.

6 and 4. And this was two years ago. So I mean, we had kids in every stage of life-- high school, middle school, elementary school. [MUSIC PLAYING] She just was not happy. She was never content. She never slept. She screamed when you laid-- after a few hours of laying down, she would wake up screaming. And you couldn't console her. We do our normal pediatrician visits when we're supposed to. And I mentioned that she had a tremor in her hands and her whole body. Neurology, because of the tremors, ordered an MRI. And I can remember the moment driving, leaving Cincinnati, driving back home and her test result popped up. And I had done some research. I'd seen the word Chiari malformation, but I didn't know anything about it. And kind of like the moment our whole world changed. [MUSIC PLAYING] I mean, we couldn't keep her in the bed. She was not upset about the pain of the surgery. She was ready to go. She was trying to get out of bed. She was trying to walk. She was smiley. And it was like the pain she'd always felt was gone. And the pain of surgery didn't match what she'd always felt. And she was just ready to run laps around the ICU. Austin's running around the room, living her best life after just having brain surgery a few weeks before. And they decided to do an MRI on Mali-- Amelia. And they came in and was like, she has something called Chiari malformation. And I was like, OK. I know all about it.

Less than a week post-surgery when we got that second diagnosis. [MUSIC PLAYING]

It was so terrifying. Now you're doing two surgeries on two different things. And your brain and spine, very important.

The surgery process itself was just as nerve wracking as the first time. Just sitting in the waiting room. It feels like days that you're sitting there just waiting to see what the outcome is.

We got through them. And Amelia was great after surgery too. I mean, she was down in the toy room at the hospital a few days later playing. So at the same time as all this is going on, our Aubrey, who was about 7 at the time--

Yeah.

--she started getting UTI after UTI after UTI out of nowhere. I remember driving down the road and it just clicked in my head, and I was like-- and this is months into this. And I was like, oh, my gosh, I need to get an order for an MRI. We did the MRI of her brain and she had Chiari. In the end, we decided to just do both surgeries. Austin's was March, Meli's was October, and Aubrey's was November 2023, three separate trips. And Aubrey had both brain and spine surgery. You've got to be kidding.

Her sixth grade year, she went out and tried out and made the middle school basketball team. And she would go to practice. And as soon as she would get home, she was straight to the bed and could barely walk.

It would take days for her to recover from that. And she would have headaches. Eventually got imaging, and there was the Chiari, and there was the tethered cord. We decided a few months later to just go and proceed with just the tethered spinal cord surgery and hoping that releasing her tethered cord would let the Chiari go back-- her brain go back up where it was supposed to be.

Postop, she's right back to-- she's on the dance team. She's very, very active.

Never stops.

Yeah.

It was scary in the moment. It was hard. It wasn't some magical trip. But looking back on it now, they don't really talk about the pain. They're proud of what they went through.