Speaker 1: We have such an incredibly sad story to talk about today,
Speaker 1: and now I want to introduce you to a woman.
Speaker 1: Her name is Haley Webb. She's a former Channel nine
Speaker 1: news reporter and Hailey has been speaking recently about a
Speaker 1: genetic diagnosis that she's received from a disease that she
Speaker 1: is currently experiencing. Now, this disease is something that her
Speaker 1: brother was also diagnosed with, and it has such little
Speaker 1: research behind it, such little understanding that it is fatal,
Speaker 1: and her brother is already well affected by this disease
Speaker 1: and he was only given around six months and now
Speaker 1: Hailey is experiencing the same thing and it's unbelievable what
Speaker 1: they are going through.
Speaker 2: Hailey, Hi, Welcome.
Speaker 3: To the show. Hi Hailey, Hello, how you going? Hi?
Speaker 1: Hailey? I mean, I've read that this is something that's
Speaker 1: triggered in you and you live a relatively normal life
Speaker 1: and then all of a sudden you're finding out that
Speaker 1: this is a disease that you are dealing with. What
Speaker 1: happened in your family? And when was it that you
Speaker 1: had your first diagnosis done for this disease?
Speaker 3: My brother and I were diagnosed with the disease in
Speaker 3: twenty fifteen after my mother passed away, so we have
Speaker 3: always kind of known that we have the disease. You
Speaker 3: can live with the disease completely unaffected. So you either
Speaker 3: have the gene or you don't. We both have the gene.
Speaker 3: You can live with the gene unaffected. It only becomes
Speaker 3: an issue once the gene triggers. And once the gene triggers,
Speaker 3: essentially your body start mass producing these mutated proteins that
Speaker 3: attack your brain and essentially stop you from being able
Speaker 3: to reach rem sleep. As we all know, without restorative sleeps,
Speaker 3: the body begins to deteriorate and you have about six
Speaker 3: months to live. So unfortunately, my dying brother he triggered
Speaker 3: in April. He was diagnosed as triggering the day after
Speaker 3: his son's first birthday. Yeah, it's in an awful time.
Speaker 2: Just tell us a little bit more about exactly what
Speaker 2: fatal familial insomnia is very rare.
Speaker 3: There's only around fifty families in the world that even
Speaker 3: have this disease. So yeah, we really won the lotto
Speaker 3: with that one. But it's so rare. Most doctors that
Speaker 3: you just speak to haven't even heard of it. And
Speaker 3: so that's why for us it's so important to raise
Speaker 3: awareness because awareness, of course, leads to funds for research,
Speaker 3: and because there's not that many of us that carry
Speaker 3: the disease, of course, there's not that much of a
Speaker 3: push to find a cure. So that's kind of what
Speaker 3: it was really driving us to raise awareness and raise
Speaker 3: funds for a cure.
Speaker 4: Hailey, I read that and you said that you were
Speaker 4: diagnosed in twenty fifteen, both you and your brother. I
Speaker 4: can't even begin to imagine how you live your life
Speaker 4: every day knowing that, I mean, this fatal familiar in
Speaker 4: some many is a death sentence. It's just something that
Speaker 4: you can't think about every day, right, and then you've
Speaker 4: got the triggers that you're waiting for. Do you almost
Speaker 4: wait every day for the trigger to happen or something
Speaker 4: to trigger the trigger?
Speaker 3: Well, no one knows what the true is. And that's
Speaker 3: the issue is, like there's no cure, there's no prevention,
Speaker 3: there's no therapies. We don't know what the trigger is.
Speaker 3: It just happens one day and then essentially you're given
Speaker 3: six months to live. So, as you mentioned, it's not
Speaker 3: something that I try. Well, before this year, let's put
Speaker 3: it this way, before this year, my brother and I
Speaker 3: had you know, made a proactive decision that we weren't
Speaker 3: going to dwell on it every day. There's nothing we
Speaker 3: can do to change it, there's nothing we can do.
Speaker 3: We just stop it. We just needed to focus on
Speaker 3: the things that we could control. So the things that
Speaker 3: we could control were raising awareness, raising funds for research,
Speaker 3: taking part in the clinical trials. So we've flown over
Speaker 3: to America a couple of times and volunteered to be
Speaker 3: guinea pigs, and you know, had lumbar punctures and done
Speaker 3: all the clinical trials to help them find a cure,
Speaker 3: and then of course do IVF. So both my brother
Speaker 3: and his wife and me and my husband, we have
Speaker 3: undergone years and years and years of IVF to ensure
Speaker 3: that we don't pass the gene on to our children.
Speaker 3: So Lachlan and his wife have a beautiful eighteen months
Speaker 3: old little boy, and we know that he doesn't have
Speaker 3: the disease. I've got a three and a half year
Speaker 3: old fun we know that he doesn't have the disease.
Speaker 3: And I'm currently about a few weeks away from giving
Speaker 3: birth and my second boy, so we know that he
Speaker 3: doesn't have the disease either.
Speaker 2: Do you feel a real sense of relief that you
Speaker 2: know that this ends with this generation like you guys have.
Speaker 2: I know, it sounds like it must have been absolutely exhunting, exhausting,
Speaker 2: but by this genetic testing and all these process of IVF,
Speaker 2: you have stopped this from being passed on, which must
Speaker 2: be a really amazing feeling for you to know.
Speaker 3: Oh my gosh, it's such a relief. Yeah. I mean,
Speaker 3: this family curse, I guess, has been passed down from
Speaker 3: generation to generation in my family, and it wasn't until
Speaker 3: my generation that we've had the opportunity, thanks to the
Speaker 3: miracles of modern medicine, to be able to stop it
Speaker 3: in its tracks. And you know, and I think about
Speaker 3: this a lot, as you know, we put ourselves really
Speaker 3: through the ringer over the last We've been doing IVF
Speaker 3: for eight years, and we've you know, emotionally exhausting, physically exhausting,
Speaker 3: financially exhausting. And then every time I think it's all
Speaker 3: getting too much, I just remind myself that, you know,
Speaker 3: we're stopping the family curse in its tracks. My kids
Speaker 3: will never know what it's like to grow up with
Speaker 3: the burden of this hanging over their heads. But not
Speaker 3: only them, like their children and their children and their children.
Speaker 3: You know, we've stopped it in our family and that's
Speaker 3: I think the legacy that I really want to leave.
Speaker 1: Yeah, I'm so sorry that you're going through this. It's incomprehensible. Yeah,
Speaker 1: and I'm sorry that there's not more support or more
Speaker 1: understanding out there for you.
Speaker 4: Well, listen, you can jump in. There is a go
Speaker 4: fund me support Lachland Web and family in battle with FFI.
Speaker 4: Their goalies three hundred thousand. You guys are so close,
Speaker 4: I mean, you a couple of thousand away from reaching
Speaker 4: that goal. So you can go and head online go
Speaker 4: fund me. We'll put it on the pick Up socials
Speaker 4: too if you want to link to that and you
Speaker 4: can suss it out. All right, Thank you so much
Speaker 4: Hayley for coming on the show and shedding some light
Speaker 4: on on that awful, awful condition.
Speaker 2: Thanks with you and your family.
Speaker 3: Thank you so much, guys, and thanks for helping us
Speaker 3: raise awareness.
Speaker 1: Thanks any time.
Speaker 4: All right, we're back after this here on the Pickup