WEBVTT - Mini! Hayley Webb talking about Fatal Familial Insomnia

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<v Speaker 1>We have such an incredibly sad story to talk about today,

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<v Speaker 1>and now I want to introduce you to a woman.

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<v Speaker 1>Her name is Haley Webb. She's a former Channel nine

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<v Speaker 1>news reporter and Hailey has been speaking recently about a

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<v Speaker 1>genetic diagnosis that she's received from a disease that she

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<v Speaker 1>is currently experiencing. Now, this disease is something that her

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<v Speaker 1>brother was also diagnosed with, and it has such little

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<v Speaker 1>research behind it, such little understanding that it is fatal,

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<v Speaker 1>and her brother is already well affected by this disease

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<v Speaker 1>and he was only given around six months and now

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<v Speaker 1>Hailey is experiencing the same thing and it's unbelievable what

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<v Speaker 1>they are going through.

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<v Speaker 2>Hailey, Hi, Welcome.

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<v Speaker 3>To the show. Hi Hailey, Hello, how you going? Hi?

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<v Speaker 1>Hailey? I mean, I've read that this is something that's

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<v Speaker 1>triggered in you and you live a relatively normal life

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<v Speaker 1>and then all of a sudden you're finding out that

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<v Speaker 1>this is a disease that you are dealing with. What

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<v Speaker 1>happened in your family? And when was it that you

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<v Speaker 1>had your first diagnosis done for this disease?

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<v Speaker 3>My brother and I were diagnosed with the disease in

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<v Speaker 3>twenty fifteen after my mother passed away, so we have

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<v Speaker 3>always kind of known that we have the disease. You

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<v Speaker 3>can live with the disease completely unaffected. So you either

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<v Speaker 3>have the gene or you don't. We both have the gene.

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<v Speaker 3>You can live with the gene unaffected. It only becomes

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<v Speaker 3>an issue once the gene triggers. And once the gene triggers,

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<v Speaker 3>essentially your body start mass producing these mutated proteins that

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<v Speaker 3>attack your brain and essentially stop you from being able

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<v Speaker 3>to reach rem sleep. As we all know, without restorative sleeps,

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<v Speaker 3>the body begins to deteriorate and you have about six

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<v Speaker 3>months to live. So unfortunately, my dying brother he triggered

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<v Speaker 3>in April. He was diagnosed as triggering the day after

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<v Speaker 3>his son's first birthday. Yeah, it's in an awful time.

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<v Speaker 2>Just tell us a little bit more about exactly what

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<v Speaker 2>fatal familial insomnia is very rare.

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<v Speaker 3>There's only around fifty families in the world that even

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<v Speaker 3>have this disease. So yeah, we really won the lotto

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<v Speaker 3>with that one. But it's so rare. Most doctors that

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<v Speaker 3>you just speak to haven't even heard of it. And

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<v Speaker 3>so that's why for us it's so important to raise

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<v Speaker 3>awareness because awareness, of course, leads to funds for research,

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<v Speaker 3>and because there's not that many of us that carry

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<v Speaker 3>the disease, of course, there's not that much of a

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<v Speaker 3>push to find a cure. So that's kind of what

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<v Speaker 3>it was really driving us to raise awareness and raise

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<v Speaker 3>funds for a cure.

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<v Speaker 4>Hailey, I read that and you said that you were

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<v Speaker 4>diagnosed in twenty fifteen, both you and your brother. I

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<v Speaker 4>can't even begin to imagine how you live your life

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<v Speaker 4>every day knowing that, I mean, this fatal familiar in

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<v Speaker 4>some many is a death sentence. It's just something that

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<v Speaker 4>you can't think about every day, right, and then you've

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<v Speaker 4>got the triggers that you're waiting for. Do you almost

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<v Speaker 4>wait every day for the trigger to happen or something

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<v Speaker 4>to trigger the trigger?

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<v Speaker 3>Well, no one knows what the true is. And that's

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<v Speaker 3>the issue is, like there's no cure, there's no prevention,

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<v Speaker 3>there's no therapies. We don't know what the trigger is.

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<v Speaker 3>It just happens one day and then essentially you're given

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<v Speaker 3>six months to live. So, as you mentioned, it's not

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<v Speaker 3>something that I try. Well, before this year, let's put

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<v Speaker 3>it this way, before this year, my brother and I

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<v Speaker 3>had you know, made a proactive decision that we weren't

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<v Speaker 3>going to dwell on it every day. There's nothing we

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<v Speaker 3>can do to change it, there's nothing we can do.

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<v Speaker 3>We just stop it. We just needed to focus on

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<v Speaker 3>the things that we could control. So the things that

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<v Speaker 3>we could control were raising awareness, raising funds for research,

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<v Speaker 3>taking part in the clinical trials. So we've flown over

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<v Speaker 3>to America a couple of times and volunteered to be

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<v Speaker 3>guinea pigs, and you know, had lumbar punctures and done

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<v Speaker 3>all the clinical trials to help them find a cure,

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<v Speaker 3>and then of course do IVF. So both my brother

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<v Speaker 3>and his wife and me and my husband, we have

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<v Speaker 3>undergone years and years and years of IVF to ensure

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<v Speaker 3>that we don't pass the gene on to our children.

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<v Speaker 3>So Lachlan and his wife have a beautiful eighteen months

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<v Speaker 3>old little boy, and we know that he doesn't have

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<v Speaker 3>the disease. I've got a three and a half year

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<v Speaker 3>old fun we know that he doesn't have the disease.

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<v Speaker 3>And I'm currently about a few weeks away from giving

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<v Speaker 3>birth and my second boy, so we know that he

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<v Speaker 3>doesn't have the disease either.

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<v Speaker 2>Do you feel a real sense of relief that you

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<v Speaker 2>know that this ends with this generation like you guys have.

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<v Speaker 2>I know, it sounds like it must have been absolutely exhunting, exhausting,

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<v Speaker 2>but by this genetic testing and all these process of IVF,

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<v Speaker 2>you have stopped this from being passed on, which must

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<v Speaker 2>be a really amazing feeling for you to know.

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<v Speaker 3>Oh my gosh, it's such a relief. Yeah. I mean,

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<v Speaker 3>this family curse, I guess, has been passed down from

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<v Speaker 3>generation to generation in my family, and it wasn't until

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<v Speaker 3>my generation that we've had the opportunity, thanks to the

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<v Speaker 3>miracles of modern medicine, to be able to stop it

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<v Speaker 3>in its tracks. And you know, and I think about

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<v Speaker 3>this a lot, as you know, we put ourselves really

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<v Speaker 3>through the ringer over the last We've been doing IVF

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<v Speaker 3>for eight years, and we've you know, emotionally exhausting, physically exhausting,

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<v Speaker 3>financially exhausting. And then every time I think it's all

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<v Speaker 3>getting too much, I just remind myself that, you know,

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<v Speaker 3>we're stopping the family curse in its tracks. My kids

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<v Speaker 3>will never know what it's like to grow up with

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<v Speaker 3>the burden of this hanging over their heads. But not

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<v Speaker 3>only them, like their children and their children and their children.

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<v Speaker 3>You know, we've stopped it in our family and that's

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<v Speaker 3>I think the legacy that I really want to leave.

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<v Speaker 1>Yeah, I'm so sorry that you're going through this. It's incomprehensible. Yeah,

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<v Speaker 1>and I'm sorry that there's not more support or more

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<v Speaker 1>understanding out there for you.

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<v Speaker 4>Well, listen, you can jump in. There is a go

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<v Speaker 4>fund me support Lachland Web and family in battle with FFI.

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<v Speaker 4>Their goalies three hundred thousand. You guys are so close,

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<v Speaker 4>I mean, you a couple of thousand away from reaching

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<v Speaker 4>that goal. So you can go and head online go

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<v Speaker 4>fund me. We'll put it on the pick Up socials

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<v Speaker 4>too if you want to link to that and you

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<v Speaker 4>can suss it out. All right, Thank you so much

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<v Speaker 4>Hayley for coming on the show and shedding some light

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<v Speaker 4>on on that awful, awful condition.

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<v Speaker 2>Thanks with you and your family.

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<v Speaker 3>Thank you so much, guys, and thanks for helping us

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<v Speaker 3>raise awareness.

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<v Speaker 1>Thanks any time.

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<v Speaker 4>All right, we're back after this here on the Pickup