How Bianca is defying the odds
Australia was first introduced to Bianca Saez almost 20 years ago as a teenager living with a debilitating form of Tourette’s.
Sixteen surgeries later, Bianca’s world looks very different, and so does her approach to life.
Wednesday night karaoke is a weekly routine for Bianca. A Current Affair
And yet despite her challenges, she has something very important to say, through the dream of a public speaking career.
Yes that’s right, the woman whose Tourette’s was one described as one of the most severe cases in the world wants to get on stage and talk, in the hope of educating others.
More on that further down in this article, but when A Current Affair caught up with the 34-year-old, she wanted to sing.
Wednesday night karaoke is a weekly routine for Bianca.
Her singing is spine-tingling and mind-blowing.
While her everyday life and basic conversation can be punctuated with uncontrollable tics and outbursts, on stage singing, Bianca is very different.
She sings a cappella - truly exposed, with no backing track or beats to hide behind.
And yet, she effortlessly slides between the notes with her gravelly tone.
She performs vocal tricks with the grace of an Olympic gymnast.
It’s a skill the best medical minds in the world can’t explain - how someone with Tourette’s can be signing flawlessly without a single tic.
Bianca describes it better.
Few would forget Bianca’s story on 60 Minutes when she was just 16. 60 Minutes
“Well they’ve done research on why the brain ‘quietens Tourette’s’ when you sing, but I don’t think they found much,” she told A Current Affair.
“I was singing the other night and I was just singing there and it’s like I went into the meditation zone and then when I open my eyes, I come back from another place.”
Few would forget Bianca’s story on 60 Minutes when she was just 16.
A teenager desperate for a cure telling Tara Brown how she hoped deep brain stimulation might provide that.
“I want to get rid of my tics, have a better life,” 16-year-old Bianca said.
It was a heartbreaking insight into a family at breaking point.
“Seeing her like this, it’s the last thing a parent wants,” Bianca’s Mum Lee told 60 Minutes.
Bianca with her mum Lee. A Current Affair
“When I had Bianca, I couldn’t believe something so perfect, I made that - and then for something to go wrong, it’s a nightmare.
“I never want that for my child. I love her so much,” she cried.
Almost two decades later, look at this family now.
They were all together for A Current Affair including brother Tim, mum Lee, and dad John, a retired police officer.
“In my job, I was a problem solver for other families ... and then Bianca got Tourette’s and the monster Tourette’s and I couldn’t do nothing about it,” John told A Current Affair tearing up.
“I think that’s what broke Dad’s heart the most is that he could help people at work ... but he couldn’t come home and help me,” Bianca added.
“There really wasn’t a day that went by where it wasn’t very hostile,” Tim added.
“You go to school, come home or go to work, come home. It wasn’t really a safe place, but I think the way that we bounced back every day is what kept us so strong.”
And while Lee calls Bianca her “miracle” child, Bianca says the real miracle her is family.
“I used to worry, you know, how would she get married? Will she ever have children? And I cried myself to sleep,” Lee told A Current Affair.
“I was the defensive pit bull mother that defended Bianca no matter what, but I just think we stuck together.”
"She's just a normal person who happens to have Tourette's syndrome," Lee added.
And Bianca couldn't be more grateful that her family instilled that in her.
“This family’s the best it’s ever been. Bee still has her struggles, but, you know, we’re all probably tighter than what we ever have been,” Tim said.
For the last several years, Bianca has lived independently.
Her home has modifications to withstand her sudden uncontrolled outbursts - reinforced walls, steel benchtops, guarded light switches.
They're the protections her childhood home never had.
It was a recent knife injury to her hand while cooking that re-inspired a new dream for Bianca to launch a public speaking career, educating health professionals, emergency services, corporations and school children about Tourette’s.
"I think it'd be very helpful if I can just give them a little glimpse into what it's like to live with Tourette's syndrome and how to navigate it the best way," Bianca said.
Because while some strangers are understanding while Bianca's in public, others are not.
"I say the F word in public and people look at me like I've just killed one of their family members, you know," she said.
“I still am struggling with loving myself - that’s the biggest gift I could give myself.
Bianca’s singing is spine-tingling and mind-blowing. A Current Affair
“From being treated like a monster in public when I’m ticing and there’s mothers going, ‘Come away from this lady’.
“That makes me feel so awful, but I’m on my big self-love journey and hopefully in the future I will just like, ‘You know what? Don’t have to worry about that anymore’.”
It’s why Bianca is saying no more major surgery to try to cure her Tourette’s for now.
And there’s hope on the horizon, with a watch-like device being trialled in the UK that sends pulses to the brain and reduces symptoms.
“I will never have deep brain stimulation ever again,” she said.
“It’s way too invasive and it’s not 100 per cent that it would work, but if there’s ever anything else that’s not invasive and that won’t cut me or have to have needles or have infections, I would give it a go.”
For now, Bianca finds relief in singing karaoke every week and in nature.
It’s incredible to watch.
The deeper we walk into the bush, the more Bianca's tics melt away.
She says she can feel the difference, it’s liberating.
"It's so beautiful and so peaceful," she said staring up at the canopy of trees protecting a hidden waterfall on the Sunshine Coast.
"If I could have a tree house right there that's where I would live," she joked.
For now, the best way to get in contact with Bianca for public speaking opportunities is through social media.
“Tourette’s syndrome is a little bit of a curse, but also a blessing as well, because it’s given me such an extraordinary life,” she said.
“I think it’s me finding my purpose and knowing where I wanted to go in life that helped me and my tics get better.
"I'm actually in a really good place and I just can't wait to see what my future holds."
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