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4 sisters diagnosed with rare brain condition · DEEP INSIGHT

• 0:00
  Speaker 1: And our kids are like right now, they're nineteen one,
• 0:04
  Speaker 1: turns eighteen next this weekend, twelve nine, six and four.
• 0:10
  Speaker 1: And you know this was two years ago, so I mean,
• 0:12
  Speaker 1: we had kids in every stage of life, high school,
• 0:15
  Speaker 1: middle school, elementary school. She just was not happy. She
• 0:26
  Speaker 1: was never content. She never slept. She screamed when you
• 0:29
  Speaker 1: were later, after a few hours of laying down, she
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  Speaker 1: would wake up screaming, and you couldn't console her. We
• 0:35
  Speaker 1: do our normal pediatrician visits and when we're supposed to.
• 0:39
  Speaker 1: And I mentioned then like she had a tremor in
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  Speaker 1: her hands, and kind of her whole body neurology because
• 0:45
  Speaker 1: of the tremors ordered to MRI, and that's I can
• 0:48
  Speaker 1: remember the moment driving leaving Cincinnati, driving back home, and
• 0:52
  Speaker 1: her test result popped up, and you know, I had
• 0:55
  Speaker 1: done some research. I'd seen the word kor my information,
• 0:58
  Speaker 1: but I didn't know anything about it. And kind of
• 1:01
  Speaker 1: like the moment our whole world changed. I mean, we
• 1:19
  Speaker 1: couldn't keep her in the bed. She was not upset
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  Speaker 1: about the pain of the surgery. She was ready to go.
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  Speaker 1: She was trying to get out of bed, she was
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  Speaker 1: trying to walk, She was smiley, and it was like
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  Speaker 1: the pain she'd always felt was gone, and the pain
• 1:33
  Speaker 1: of surgery didn't match, you know, what she'd always felt.
• 1:38
  Speaker 1: And she was just ready to run laps around that
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  Speaker 1: I see you, Austin's running around the room living her
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  Speaker 1: best life after just having you know, brain surgery a
• 1:54
  Speaker 1: few weeks before, and they decided to do it. M
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  Speaker 1: RL Milly Amelia and they came in and was like,
• 2:03
  Speaker 1: she has something to call QR my information and I
• 2:06
  Speaker 1: was like, okay, I know all about it.
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  Speaker 2: Listen. A week post surgery and when we got that
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  Speaker 2: second diagnosis, it was still terrifying.
• 2:32
  Speaker 1: Now you're doing two surgeries on two different things and
• 2:35
  Speaker 1: your brain is fine. Very important.
• 2:37
  Speaker 2: The surgery process itself was just as nerve wracking as
• 2:41
  Speaker 2: the first time, you know, just sitting in the waiting room.
• 2:47
  Speaker 2: You know, it feels like days that you're sitting there
• 2:51
  Speaker 2: just you know, waiting, waiting to see what the outcome is.
• 2:54
  Speaker 1: We got through them, and Amelia was great after surgery too.
• 2:58
  Speaker 1: I mean she was down in the toy room at
• 3:02
  Speaker 1: the hospital a few days later playing. So at the
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  Speaker 1: same time as all of this is going on, our Aubrey,
• 3:11
  Speaker 1: who was seven at the time, she started getting UTI
• 3:17
  Speaker 1: after ut after ut out of nowhere. I remember driving
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  Speaker 1: down the road and it just clicked in my head
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  Speaker 1: and I was like, and this is, you know, months
• 3:26
  Speaker 1: into us, and I was like, oh my gosh, I
• 3:29
  Speaker 1: need to get an order for an MRI. We did
• 3:32
  Speaker 1: the MRI of her brain and she had QR. In
• 3:37
  Speaker 1: the end, we decided to just do both surgeries. Austin's
• 3:42
  Speaker 1: was March, Millie's was October, and Aubrey's was November twenty
• 3:46
  Speaker 1: twenty three. Three separate trips, and Aubrey had both brands
• 3:53
  Speaker 1: fine surgery. You've got to be kidding.
• 4:00
  Speaker 2: Her sixth grade year, you know, she went out and
• 4:02
  Speaker 2: and tried out and made the middle school basketball team.
• 4:06
  Speaker 2: And she would go to practice and as soon as
• 4:09
  Speaker 2: she would get home, she was straight to the bed
• 4:12
  Speaker 2: and could barely take.
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  Speaker 1: Days for her to recover from that. She would have
• 4:16
  Speaker 1: had a you know, eventually got imaging and there was
• 4:19
  Speaker 1: the kiari and there was the tether cord. We decided,
• 4:23
  Speaker 1: you know a few months later, to just go and
• 4:25
  Speaker 1: proceed with just the tethered's final court surgery and hoping
• 4:28
  Speaker 1: that releasing her tethered cord would blood bloods the Kiori
• 4:33
  Speaker 1: kind of go back, you know, her brain go back
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  Speaker 1: up where it was supposed to.
• 4:37
  Speaker 2: Be post off. You know, she's right back. You know,
• 4:41
  Speaker 2: she's on the dance team. She's very, very active.
• 4:48
  Speaker 1: It was scary in the moment. It was hard. It
• 4:50
  Speaker 1: wasn't some magical trip, you know. But looking back on
• 4:55
  Speaker 1: it now, they don't really talk about the pain. They're
• 4:58
  Speaker 1: proud of what they went through.