World's most severe Tourette's case doesn't want a cure | 60 Minutes Australia

no one forgets an encounter with Bianca Sayers when I first met her 11 years ago she was 16 and had the worst case of Tourette syndrome doctors had ever seen she was a hostage to uncontrollable violent tics and sudden outbursts of extraordinary expletives Bianca was at the mercy of her own troubled mind until doctors performed radical brain surgery for two miraculous weeks she was free of her Tourette's but then cruel luck infection set in and the operation had to be reversed today Bianca still suffers severe Tourette's but she's learnt to navigate than near-impossible she's found love independence and happiness even though she still swears like a trooper thank you for letting me sing tonight it's open mic night on Queensland's Sunshine Coast and 27 year old Bianca sayers has all the spunk and bravado of a seasoned singer she's at her finest when performing persevere Tourette's somehow under control while she's seen [Music] so composed and confident on stage it's hard to believe this was Bianca at 16 it was devastating to witness this brash and beautiful teenager unable to control the ticks that wrecked her body or suppress the language that erupted from her 11 years on this is Bianca today the teenager Australians took to their hearts back in 2008 he's all grown up [Music] see that was true living an independent and joyful life every day today it's still hard but I'm trying to be positive and you know I just guess I'm very resilient I don't I think that's so good because if I wasn't resilient I don't think I'd be here right now I don't think I'd be here at all when we first met Bianca and her parents John and Leigh this was a family torn apart by Terez the illness forcing Bianca to be placed in a mental health unit I'm just a simple black I just I just want to have any family together there's there's nothing we can do to help her and as Bianca so eloquently explained she too was helpless against her Tourette's I want to get rid of my tics gonna live so how do you explain can you explain right now while you're doing that so use a chemical imbalance in the boat it's a chemical imbalance in the bay brain and it causes you to do sudden movements or yell out things that you can't have no control over you don't have any control over it do you know why you want to hurt yourself I get a feeling and I in my body and I have to hit it to make it go away Bianca's probably one of the worst cases in the world certainly worst cases we've seen back in 2008 Brisbane neurologist Professor Peter cylburn was the only hope there was being seen wearing a home for is the motive he was prepared to offer Bianca deep brain stimulation surgery making her the first patient in Australia to have such an operation for Tourette's I know when we first met you had so much hope for Bianca oh yeah I I think the hope for Bianca was that she wanted to give it a good red-hot go and the whole thing was to try and get out of the psychiatric unit at a young age rather than have a life in institutions [Music] something to go wrong heartache and desperation led the sayers family to this groundbreaking surgery over the next three hours two electrodes were placed deep in Bianca's brain where faulty neurons were causing the Tourette's the probes are connected to a battery which was put in Bianca's side the electrodes are meant to reset the misbehaving brain cells eradicating most of the tics good Bianca's transformation in those early days after her surgery was remarkable within a week she was walking without hitting and talking without swearing it's chained her whole entire life and I'm so proud of myself for doing it a decade on from what seemed a medical miracle this is Bianca today but her journey has been anything but smooth Bianca do you remember what it was like to be Tourette's free or close to Tourette's free it was only like the first two weeks that the first brain operation that I like saw an amazing amazing difference and I had the way I felt and I could write on paper again and I can read books without ripping them up but within a fortnight Bianca was struck down by terrible luck a staph infection which ultimately led to the removal of the life-changing electrodes over the last decade multiple attempts to replace them were foiled by further infections Bianca's deep brain stimulation therapy had to be abandoned allowing the Tourette's symptoms to return she was done and then it came back bad and that was that was very hard cranky I got really cranky cranky born out of disappointment yeah I just thought oh man we had this and we had that period where she was winning and and she was she was they have yeah she got her life back briefly and it would have been then just reintegrating her back into society it was like the most amazing thing like it was it was great to be able to do stuff that I've never been able to do with most of my life due to my Tourette's but um do you still long to experience that again no I I don't long for it because I had it I lost it I have to get get over it and move on and move on she has even though some days Bianca's Tourette's symptoms seem as bad as when we first met sorry [ __ ] dog can you ever get used to the hitting banks Warner do you ever get used to that swearing is all right now I probably won't I probably won't and I do struggle with it at times I find it hard to deal with sometimes I'm trying to explain to be anything that it's not a reflection on here I'm not a mum I know it's unofficial me but it's when something's very anxious you would still I would still always feel bad I know makes it because I don't want to hit anyone I don't I don't I never want to do that [Music] in the years following her operation Bianca has managed to move into her own home one that has been especially designed and reinforced to withstand her wildest tics struggling with micro circuit coming home and punching the lights in so then like I have seen your department thought if they put this around there it's a lot stronger yeah and it's not as much so I could break and stuff it so you just take your hands now yeah but that's all right I'm into it but this is my Doctor Who phone and it's feeling it's been specially made for me as a teenager this is what Bianca did to the family home not a wall was left untouched as house-proud as she is today Bianca knows she's still more than capable of destroying her own much-loved home I could not live in this house if as you know for 60 minutes last time you saw how I basically destroyed my parents house but they put hard hard wood around the walls yeah so there's no way I can put holes in the walls and everything and they've also put plastic windows in so that's a plastic window so if I bang it just bounces off so I don't end up breaking in smashing glass and cutting myself and 12 microwaves seven TVs for toasters seven kettles and 850 phones just some of the casualties of Bianca's uncontrolled moments decided just get a Pollock polished and steel even though unbelievably Bianca has not seriously hurt herself but to keep her safe all the glass from the bathroom has been removed so why doesn't show me makes me stronger and I feel like a lot of I'm sorry I'm sorry [ __ ] me I'm gonna [ __ ] not sorry I'm sorry as I found as I they are no see I've got lost my train of thought yes sir so I've lost my train of thought coming up Bianca finds love I'm sorry God and making the extraordinary ordinary very hard illness to live with but I've mastered it hopefully in quality or never [Music] that's next on 60 minutes behind the unintended hits of Bianca say is is a sweet and remorseful girl a girl who can be incredibly vulnerable as her mum Lee has long recognized how much do you worry about Bianca I do I worry a lot because being has been pushed over by a guy before because she's come out with a sexual phrase and he thought touch me okay come on baby let's go and he pushed her over and another gentleman was going to punch her in the face and you know she means Bianca spends her life trying to explain why she's doing what I say I don't know how many times she apologizes constantly I think sorry must be the most used word by you I've heard you say it I think I'd be like pushing almost millions of sarees um over my lifetime we're not you know using anything as excuses either I mean this the fact of life is this illness is so debilitating and unbelievable I suppose you know people look at the anchor and a normal person with honest [ __ ] darkness an invisible illness where you look normal but you're not despite the daily challenges of Tourette's Bianca is a much calmer and happier woman than the teenager we first met she puts that down to maturity enjoying the independence of having her own homes but also finally finding love six months ago she met Zach a man who simply sees the anchors not her Tourette's I suppose when you feel that love for someone you really just you can overlook anything about them any any anything that everyone else can consider a social stigma or anything like that way you can easily whatever look at that and a person because I feel it I can definitely tell you like falling in love like with this beautiful man well Isis it's it's helped me it's improved my motivation that's improved my my mental health had some it's made me smile it's made me it's just helped my Tourette's and my moods and everything in so many ways which is lovely but there's also the other side to it you get hit honestly I don't even notice cuz in the end she doesn't mean it we know he doesn't mean it hi everybody my name is Bianca says' and I'm 26 years old bianca is now on a mission allowing the world into her unique orbit through youtube called baby 30 it's because I need to create so much awareness and understanding not for me but people like me her first story with us has attracted an extraordinary 27 million views now she wants her own channel to reach even more people / humor and disarming candor property her greatest weapons in combating misunderstanding and mistreatment very hard illness to live with but I've mastered it hopefully soon and yeah so basically all I want to do is create awareness so people like me coming into a shopping situation then can have the comfort in the support that they need while deep brain stimulation surgery had to be reversed in bianca's that she was a trailblazer for such a confronting procedure has been processed I'm sorry my darling I'm so glad you're not pregnant this time professor Peter Steele burn I think Bianca should feel very proud of herself because was a very brave thing that she did and it has enabled us to help about 23 other people with Tourette's who are doing well you put my liver your now babe she's shown everybody what can be done that she's gone now and living her own life with a tough condition all credit to her it's a real condition you have no control of it good on so with Tourette's you never find someone just with Tourette's bianca longs for a job wishes she could drive a car and dreams of gaining enough control to one day travel we have no control over it and we don't mean it but bianca believes by embracing what she can do and accepting what she can't has given her the ultimate power over her Tourette's bigger didn't we have to keep if I was offered a cure tomorrow I don't think I would take it because I've been given this really bad Tourette's for a reason so I have to do something good with it I guess like exciting my youtube channel our pen like just want to help people in the future so if I've been able to handle badness like you guys saw in the last 60 minutes I can handle anything what about you mom if there was a cure available would you would you want it for your daughter she would probably buy yeah would ya there's no cure as a parent you you know you want nothing but the best for your child but seeing Bianca are so happy at the moment happiness and purpose in life is you know I think that that's especially true X is so easy to deal with right now because I've got a love loving beautiful man and my family and and it just it's like putting love and happiness poison potion onto you and then you just do everything you know I belong here we all belong hey thank you hello I'm Tara brown thanks for watching to keep up with the latest from 60 minutes Australia make sure you subscribe to our Channel you can also download the 9 now app for full episodes and other exclusive 60 minutes content

Channel: 60 Minutes Australia

Views: 5,602,243

Keywords: 60 Minutes, 60 Minutes Australia, Liz Hayes, Charles Wooley, Tara Brown, Liam Bartlett, Allison Langdon, Ellen Fanning, Ray Martin, Jana Wendt, Jeff McMullen, Jennifer Byrne, Mike Munro, Richard Carleton, Tracey Curro, Peter Harvey, George Negus, Ian Leslie, Gerald Stone, Sarah Abo, tourette syndrome, tourette's, Bianca Saez, medical miracle, brain stimulation surgery, medical mystery, invisible illness, inspirational, tic, brain injury

Id: U8xEin-APAo

Length: 18min 50sec (1130 seconds)

Published: Sun Aug 18 2019