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