Celine Dion makes a rare appearance with her three sons at a concert in Las Vegas after harrowing footage showed the star suffering a ten-minute ‘crisis’ seizure amid battle with Stiff Person Syndrome
Celine Dion was supported by her three sons as she attended a concert in Las Vegas, after harrowing footage from her new Prime Video documentary showed the devastating impact of her battle with Stiff Person Syndrome.
The singer, 56, was honored by Croatian cellist HAUSER (born Stjepan Hauser) during his concert at The Wynn in Las Vegas on Saturday, with pictures of the outing emerging on Instagram days later.
Celine sat in the crowd with her eldest son René-Charles (RC), 23, and twins Nelson and Eddy, 13, before meeting HAUSER backstage.
She shares her sons with late husband René Angélil, who was 73 when he died of throat cancer back in 2016.
Celine, RC, Nelson and Eddy appeared in photos and videos posted to HAUSER’s Instagram in the days following the concert.
On Tuesday, HAUSER reflected on his meeting with Celine and her family as he shared footage of Celine telling him she’s a ‘big fan’ of his, after she watched his concert from the audience before meeting him backstage.
The star opted for an elegant black dress as she spoke to the European star after his Vegas show.
The performer also included footage of Celine and her children in the audience during Saturday’s Rebel With A Cello performance.
It turns out HAUSER was aware of his VIP special guest ahead of Saturday’s gig and did a rendition of My Heart Will Go On, which was the hit theme song for Titanic, recorded by Dion for the 1997 film’s soundtrack, according to TMZ.
Overcome with emotion, Dion continued to be totally engrossed in the moments, sitting still until the very end.
After a few moments Celine began to realize that the applause not only for HAUSER but also herself, who’s been linked to the classic song since its release 27 years ago.
‘Thank you. Thank you so much,’ she could be heard mouthing through the loud response from the crowd, all while touching her heart and directing more gratitude towards the stage.
After the noise level from the applause lessoned, the Pula, Croatia native tried to convince Dion to get up on stage and perform with him, but the singer politely declined given her recent health struggles.
WHAT IS STIFF PERSON SYNDOME?
Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.
Estimates suggest it affects around 70 people in the UK and 330 in the US and remains little understood. Around twice as many women as men are hit with it.
The progressive disease sees patients’ stiffness increase over time and can lead to them needing to use a wheelchair.
There tend to be three types of the syndrome:
Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.
Experts do not know exactly what is behind the disease.
But they believe it may be caused by an autoimmune reaction, when the body attacks its own nerve cells that control muscle movement.
Around 40 per cent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.
Other autoimmune conditions like vitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.
It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why.
In stiff person syndrome, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulate motor neurons — the nerves that control movement.
Low levels of GABA cause the neurons to continuously fire when they are not supposed to, resulting in the spasms and rigidity.
What are its symptoms?
The main symptoms caused by stiff person syndrome are spasms and rigidity of the torso and limbs.
Spasms can be triggered by loud noises, with the condition also causing heightened sensitivity to sound.
Touch and emotional distress can also be felt more intensely as a result of the condition.
The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.
Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.
The lack of GABA — which regulates anxiety — in their system also affects mental health.
‘I have a dream. My biggest dream is to perform with you,’ the musician said into the microphone from the stage, which got a rousing reaction from the audience.
Celine has not sung in public since 2020 when she began struggling with muscle spasms.
When RC was just 14 years old, he captured the hearts of Canada with a moving eulogy to his late father, having been a pillar of support for Celine following her husband’s death.
Earlier this month he also joined Celine at the premiere of her new Prime Video documentary, and even sweetly handed her mother a tissue as she broke down in tears.
RC has followed in his mother’s musical footsteps by kickstarting a rap career, and he’s released five singles on SoundCloud, including Catwalks, Loft Music Remix (which borrows from The Weeknd’s song), Never Stop, The Apple and The Kid.
He’s also posed for a snap with music superstar The Weeknd and has shared the musician’s concert videos on Instagram.
René-Charles previously spoke to the Montreal Gazette after the songs dropped and shared the moment he played his mom the songs for the first time.
‘I just felt like keeping it on the low. But she loved it. She was just kind of stunned at first, because she’d never heard anything from me,’ he said.
In 2017, RC also made a cameo at her concert in Paris, while she sang a cover of the Michael Jackson hit Black or White.
Celine has referred to her eldest child as a ‘miracle child,’ previously telling PEOPLE that she’s embraced motherhood.
‘It relaxes me to read stories to him, do finger painting, play with Play-Doh. I think people have a hard time imagining I can have a normal life, but I do,’ she said.
Celine then welcomed her twins in 2010 after six rounds of IVF and a devastating miscarriage.
Eddy was named after producer Eddy Marnay, while Nelson was named after Nelson Mandela, whom Dion once met while on tour.
When Eddy and Nelson turned 10 in October 2020, Celine shared a touching tribute to them on Instagram, writing: ‘Nelson and Eddy, you have been bringing so much joy, love and laughter into our lives every single day for the past 10 years.
‘You make me, your big brother and your Dad, who is for sure watching over you, so very proud. Happy birthday my beautiful boys! We love you so very much.’
It comes after the star’s heartbreaking documentary showed the devastating effect of her battle with Stiff Person Syndrome.
New scenes from the film showed the Grammy winner suffering an agonising ten-minute seizure, with the star seen gasping for breath as medical professionals desperately attempt to alleviate her painful muscle spasms while a camera crew quietly filmed the ordeal.
In clear distress, a frantic Dion was given a medicinal nasal spray, commonly used to treat the effects of cluster seizures in sufferers of SPS.
Celine was diagnosed with the condition, a rare autoimmune neurological disorder that causes muscle stiffness and uncontrollable spasms, in 2022.
Her subsequent struggles have been documented in new Amazon Prime release I Am: Céline Dion – a heartbreaking look at the superstar’s daily life as she comes to terms with SPS and its debilitating effects.
A new clip, shared ahead of its release on June 25, captured Celine as her stricken body went into ‘crisis’ during a filmed consultation with medical professionals.
The singer looked on helplessly as doctors gently lay her in a comfortable position and check her vitals.
All the while, her bare-feet remained rigid as she battled the debilitating effects of the rare condition.
After receiving assistance the singer was finally able to sit upright and covered herself in a blanket before admitting her embarrassment at losing control of her body in front of the cameras.
She told the camera: ‘Everytime something like this happens it makes you feel so embarrassed and so, like, I don’t how to express it, it’s just… you know, like to not have control of yourself..’
An emotional Dion breaks down while admitting she hasn’t given up on resuming her stage career at some point in the future.
She said: ‘I still see myself dance and sing. I always find plan b and plan c, you know. That’s me. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. But I won’t stop. I won’t stop.’
Director Irene Taylor told the PA news agency she was thinking ‘should I film it’ when Dion went ‘very quickly’ into the attack, but decided to continue as the singer, known for her powerful voice, had told her not ‘to ask permission to film something’.
‘But there were several people in the room and everyone was doing what they were trained to do to help her, they’d all been given medical training on what to do if this happens.
‘So she was in the best hands she could be in. If they needed an extra pair of hands, I would have dropped my microphone and gotten in (to) help them without a doubt. But I did decide to keep filming, knowing that we didn’t have to use it.’
The documentary film’s director Irene Taylor says Dion was adamant that the near 10-minute scene in which she experiences a lengthy spasm be retained.
Dion revealed her diagnosis in 2022 and has previously said it that can cause spasms so strong that can break ribs and feel like strangulation of the throat.
Taylor added that Dion said ‘we can always talk about it later if I’m uncomfortable with it’ and ‘just basically stayed out of the way’.
She also said: ‘After the episode occurred, and she sang that beautiful song, she left in very high spirits. Believe it or not, she left that location in very high spirits. And she was actually taking care of me.
‘She squeezed my hand and she was just about to drive away in the car, she reached her hand out the window. And she said, ‘Don’t worry about what happened’.
‘And I think that was her way of saying, if you filmed that you can you know, it’s OK. It’s OK. I don’t know what it looked like. And I thought, yeah, but she doesn’t know what it looks like. Like… she was only semi-conscious. So ultimately, I did edit it into the film.
‘And what you see in this final film is exactly what I showed her the first time. She didn’t want me to change it at all.’
When asked why she thinks Dion grabbed her hand, she replied saying she thought she was ‘hiding’ her emotions.
‘In that moment when she reached out and grabbed my hand,’ she said. ‘Maybe I was showing how upset I was, but I was so relieved that she was OK.
‘But I was also inspired because she sang and she performed and I had never seen her in concert. And I was like this is what it must be like to see Céline in concert.
‘Because I was like so overcome with, you know, this like ‘Hell yeah’, like (I felt) emotion (on) me. You know, when she did all of her Céline Dion things, her mannerisms, and so, I really appreciated that.’
Taylor, also known the Oscar-nominated documentary The Final Inch and Beware The Slenderman, said: ‘I would have never shown it if she didn’t want me to, that’s just the honest truth. It’s too personal.’
Taylor says that Dion ‘never asked me how I was editing something’, but explained ‘it’s fair to say that she set the film on the course it took by wanting to give a lot of herself’.
She said: ‘I couldn’t have done it without her will, you know the will is very powerful and I think any public figure can decide to let go of this narrative that’s been constructed about them for a long time, because sometimes they don’t even have control of that narrative, it’s like, it becomes a force of its own.’
In December 2022, Dion revealed she’d been diagnosed with stiff person syndrome, a serious neurological condition, and that she would be postponing tour dates due to the condition.
By May of the following year, she had cancelled all of her remaining concerts, citing her ongoing battle with the disease.
The condition, which affects one in a million people and causes muscles to tense uncontrollably ultimately leaves sufferers as ‘human statues’ as it progressively locks the body into rigid positions, leaving sufferers unable to walk or talk.
While there is no cure for SPS, there are treatments that slow down the progression and Dion revealed she was doing all she could to minimise symptoms.
She addressed her fans in a tearful Instagram post on December 8 2022, adding that it was forcing her to postpone her European tour.
‘Hello everyone, I’m sorry it’s taken me so long to reach out to you. I miss you all so much and can’t wait to be on stage talking to you in person,’ she wrote.
‘As you know, I’ve always been an open book and I wasn’t ready to say anything before but I’m ready now.
‘I’ve been dealing with problems with my health for a long time, and it has been really difficult for me to face my challenges and to talk about everything that I’ve been going through.
‘Recently, I’ve been diagnosed with a very rare neurological disorder called the Stiff Person Syndrome, which affects one in a million people.
‘While we’re still learning about this rare condition, we now know this is what’s been causing all the spasms I’ve been having.’
Detailing the impact the condition has had on her, Dion continued: ‘Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.
‘It hurts me to tell you today that this means I won’t be ready to restart my tour in Europe in February.’
She added: ‘I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me help.
‘I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again but I have to admit it’s been a struggle.
‘All I know is singing, it’s what I’ve done all my life and it’s what I love to do the most. I miss you so much. I miss seeing all of you being on the stage performing for you.
‘I always give 100 percent when I do my show but my condition is now allowing me to give you that right now.
‘For me to reach you again, I have no choice but to concentrate on my health at this moment, and I have hope that I’m on the road to recovery. This is my focus, and I’m doing everything I can to recuperate.
‘I want to thank you so much for your wishes and love and support on my social media. This means a lot to me. Take care of yourselves. Be well. I love you guys so much and I really hope I can see you again real soon.’
Dion’s sister Claudette later shared an update on the Power Of Love singer’s health.
Speaking to Le Journal de Montreal (via SheMazing), Claudette said she was being cared for by their sister Linda and working closely with researchers who specialise in the rare condition.
‘We can’t find any medicine that works, but having hope is important,’ she revealed.
‘I honestly think that she mostly needs to rest. She always goes above and beyond [when performing], she always tries to be the best and top of her game.
‘At one point, your heart and your body are trying to tell you something. It’s important to listen to it.’
She added: ‘[Performing] is innate to her, she’s disciplined in every area of her life,’ Claudette added.
‘When I call [Celine] and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard.’
Dion subsequently made her first public appearance in three-and-a-half years at a hockey match in November 2023.
The superstar Titanic singer was spotted in public for the first time in three-and-a-half years as the Montreal Canadiens took on the Vegas Golden Knights.
In footage posted online, Dion was accompanied by her sons René-Charles and twins Nelson and Eddy, and appeared to be in great spirits as she greeted players and fans in the locker rooms after the match.
Months later, the singer made a shock appearance at the 2024 Grammy Awards.
The star was visibly emotional as she walked onstage with the support of eldest son Rene-Charles Angelil, 23, to cheers and a standing ovation and to present Album of the Year.
She said: ‘Thank you, all! I love you right back. You look beautiful. When I say I’m happy to be here, I really mean it from my heart.
‘Those who have been blessed enough to be here at the Grammy Awards must never take for granted the tremendous love and joy that music brings to our lives and to people all around the world.’
