Celine Dion Vows to Fight On Against Stiff-Person Syndrome For Sake of Sons: ‘I Don’t Want Them To Be Scared’

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The singer also told NBC that she is determined to get back on stage, "even if I have to crawl," hinting that an as-yet-unannounced return is in the works.

Céline Dion

Céline Dion asiste a la 66a entrega anual de los premios Grammy, en la Crypto.com Arena, el 4 de febrero de 2024 en Los Ángeles. Neilson Barnard/Getty Images for The Recording Academy

Celine Dion was diagnosed with the rare autoimmune and neurological disorder Stiff-Person Syndrome in 2022, six years after she lost the love of her life, husband René Angélil, to throat cancer. Now, in an People magazine cover story, the singer reveals that her three sons with Angélil are the driving force behind her relentless fight against the disease that can cause painful muscle spasms and difficulty breathing and walking.

“I barely could walk at one point, and I was missing very much living. My kids started to notice. I was like, ‘Okay, they already lost a parent. I don’t want them to be scared,'” said Dion, 56, of the reactions from René-Charles (23) and 13-year-old twins Nelson and Eddy. “I let them know, ‘You lost your dad, [but] mom has a condition and it’s different. I’m not going to die. It’s something that I’m going to learn to live with.”

While the symptoms of the chronic disorder began appearing in the mid-2000s, they got progressively worse, until Dion made the announcement in Dec. 2022 that she’d been diagnosed with the incurable ailment that caused her to cancel a planned tour that year. Dion talks about the difficult road to recovery in the upcoming Prime Video documentary I Am: Celine Dion (June 25) in which she vows to find a way to make it back on stage for her fans. “If I can’t run, I’ll walk,” she says in the film. “If I can’t walk, I’ll crawl… I won’t stop.”

NBC has been previewing tonight’s (June 11) one-hour primetime special sit-down with Dion in which the powerhouse Canadian vocalist described the decision to come clean with her fans, saying, “the burden was like too much.” In a previous preview, Dion described the agonizing pain she’s endured, saying it feels like “somebody is strangling you… It’s like somebody is pushing your larynx/pharynx this way [raises voice]. It was like talking like that, and you cannot go high or lower. It gets into a spasm,” adding that she’s broken ribs as a result of the powerful spasms caused by the disorder.

In the latest teaser, Dion said she’s spent her entire life in the industry being a performer and “loving every moment of it,” pointedly adding, “this passion will never go away.” Speaking to the Today Show‘s Hoda Kotb, Dion says she began to feel like something was off when her body was getting “more rigid” during a show in Germany on her 2008-2009 Taking Chances tour when her vocal cords began to spasm and she described being “very, very, very scared.”

The panic led to more spasms and she immediately noticed her vocals were getting more nasal, so she lowered the keys on the songs in order to gain a measure of control over a situation she could tell she could not control. In the documentary, Dion admits to lying to her precious fans at the time and blaming her issues on a sinus infection, but in hindsight, she tells Kotb, she should have taken the time to figure out what was actually going on at a time when husband Angélil was fighting for his life.

“Lying for me… the burden was too much,” Dion tells Kotb. After a decade of testing and treatment Dion got her answer, which she shared with her fans in a 2022 statement. Now, after years of intense physical therapy, vocal rehab and medication, Dion vows to Kotb that she will be back on stage some day, “even if I have to crawl… even if I have to talk with my hands. I will. I will.” Kotb hints that Dion has already planned her return to stage, but has not yet announced when that will be.

The full interview will air during a one-hour primetime special on NBC on Tuesday (June 11) at 10 p.m. ET.

Watch a preview of tonight’s NBC special below.

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