The many tragedies of Celine Dion's life as she shares SPS diagnosis

2022-12-08

How can her heart go on? As Celine Dion announces she has an incurable neurological disease diagnosis, FEMAIL reveals the other devastating tragedies she’s had to weather – from deaths of her husband and brother within DAYS to loss of her 16-year-old niece

Celine, 54, announced on Thursday that she had been diagnosed with Stiff Person Syndrome (SPS) – a rare neurological disorder which causes muscles to tense uncontrollably and leaves sufferers as ‘human statues’
The singer has faced a series of heartbreaking blows throughout her life – starting with the death of her 16-year-old niece in 1993, who spent her final moments in the singer’s arms after a battle with cystic fibrosis
The My Heart Will Go On songstress had another devastating loss in January 2016, when her husband-of-22-years, Rene Angelil, and her brother both died of cancer just two days apart
Afterwards, it was reported that Celine became so ‘grief-stricken’ over the two deaths that she couldn’t even attend her brother’s funeral
In addition, the now-54-year-old has battled other health issues over her decades-long career, and she even almost lost her ability to sing in 2012, when she was diagnosed with ‘weakness in her right vocal chord’
As Celine shares the heart-wrenching news with the world, FEMAIL has taken a look back at the many other devastations she has faced throughout her life

Celine Dion announced on Thursday that she has been diagnosed with Stiff Person Syndrome (SPS) – a rare neurological disorder which causes muscles to tense uncontrollably and ultimately leaves sufferers as ‘human statues’ as it progressively locks the body into rigid positions.

The singer, 54, has faced a series of heartbreaking blows throughout her life – starting with the death of her 16-year-old niece in 1993, who passed away in her arms due to cystic fibrosis, followed by the passing of her father in 2003, which she later described as ‘very difficult’ since they were ‘so close.’

The My Heart Will Go On songstress had another devastating loss in January 2016, when her husband-of-22-years, Rene Angelil, and her brother both died of cancer just two days apart. Afterwards, it was reported that Celine became so ‘grief-stricken’ that she couldn’t even attend her brother’s funeral.

In addition, she battled other health issues over her decades-long career, which resulted in her almost losing her ability to sing in 2012 – after she was diagnosed with ‘weakness in her right vocal chord.’

Heartbreaking: Celine Dion announced on Thursday that she has been diagnosed with Stiff Person Syndrome (SPS) – a rare neurological disorder which causes muscles to tense uncontrollably and ultimately leaves sufferers as ‘human statues’

The singer (seen in 2019), 54, has faced a series of heartbreaking blows throughout her life – starting with the death of her 16-year-old niece in 1993, who passed away in her arms due to cystic fibrosis, followed by the passing of her father in 2003

Tragedy: The My Heart Will Go On songstress had another devastating loss in January 2016, when her husband-of-22-years, Rene Angelil, and her brother both died of cancer just two days apart. She is seen with her husband in 2012

The Canadian popstar, who is now a mother-of-three, also spent years struggling to conceive with her husband after the birth of their first son, René-Charles, in 2001, and she later revealed that she suffered from a tragic miscarriage in 2010.

Hasn’t been an easy ride: As Celine shares the heart-wrenching news with the world, FEMAIL has taken a look back at the many other devastations she has faced throughout her life

Despite the numerous hardships, Celine has continued to prevail – becoming one of the most successful singers of all time, with record sales reaching more than 200 million worldwide across her 12 albums.

Over the years, she has also sold out numerous world tours – including three residencies – launched her own management company, released her a popular fragrance, dropped three different collections of handbags, and so much more.

Celine spoke out about her battle with SPS in a tearful Instagram post on Thursday morning, in which she announced that she had to cancel her upcoming European tour due to continued body ‘spasms’ – which were affecting ‘every aspect of her daily life’ and making it difficult for her to walk.

As Celine shares the heart-wrenching news with the world, FEMAIL has taken a look back at the many other devastations she has weathered throughout her life – from the passing of two of her loved ones within days of one another to the death of her teenaged niece, who spent her last moments in Celine’s arms.

Celine lost her father to cancer in 2003, something she called ‘very difficult’ since they were so ‘close’

Celine’s first devastating blow came in 2003, when her father, Adhémar Dion, died from cancer at age 80. She told Larry King afterwards: ‘It’s very difficult, when you lose a parent, when you lose a close, close, close one’

Celine’s first devastating blow came in 2003, when her father, Adhémar Dion, died from cancer at age 80.

‘It’s very difficult, when you lose a parent, when you lose a close, close, close one,’ she told Larry King on his show afterwards. ‘No matter how old they are. Even though if you expect it, you can never be prepared for it.’

She explained to the talk show host that she had a strange feeling the night before he died that he was going to ‘pass away,’ which she thought was her father ‘saying goodbye’ to her

She explained to the talk show host that she had a strange feeling that he was going to ‘pass away’ the night before he died – which she thought was her father ‘saying goodbye’ to her.

‘I will always remember this for the rest of my life,’ she said. ‘I couldn’t sleep that night and I had a show the next day.

‘I was going to see my dad in two weeks. I knew he had cancer and I knew he was sick. And at 5:15 am, my husband said, “You’re not sleeping.” I said, “I can’t sleep.”

‘I said, “If my father passes away, are we going to fly to Montreal right away?” He says, “Of course, honey. Don’t think about this. I’m going to let you rest, I’m going to go in my room.”

‘He goes in his room, he comes back 10 minutes after and says, “Your father passed away.” He said goodbye to me. I know he said goodbye to me.’

She added that she decided to go through with her performance that night ‘for her dad.’ She continued: ‘After the second or third song, I said, “I lost my dad this morning.”

‘[The audience] felt very uncomfortable. I’m sorry to all of them that I put them through this, but I did it for my dad. I needed to do it. I did it for him.

‘I flew [to Montreal] the next day. We took a break and I flew and I went to see my dad. He died at home in my mother’s arms. Barely no pain. In his sleep. In his beautiful Lazy Boy. We cannot ask for better. It was great. We’re very thankful for that.’

Celine’s husband, Rene, passed away from throat cancer in 2016, after a long battle with the disease

Celine met her future-husband, Rene (seen in 1990 together), when she was just 12. Rene, who was 26 years her senior and working as a music manager the time, was sent a demo tape of Celine singing and was instantly drawn to her talent

He soon became her manager, and for years, he helped manage her career. When she was age 19 and he was 45, romantic feelings began to develop and five years later, in 1994, they became husband and wife

Celine met her future-husband, Rene, when she was just 12 years old. Rene, a former pop singer who was 26 years her senior and working as a music manager the time, was sent a demo tape of Celine singing and was instantly drawn to her talent.

The couple welcomed three children together, a son named René-Charles, 21, and twin boys named Nelson and Eddy, 12. Celine and Rene are seen after René-Charles’ birth

It’s been said that he was so impressed by Celine’s voice that hearing it for the first time brought tears to his eyes. He soon became her manager, and for years, he helped her career flourish.

When she was age 19 and he was 45, romantic feelings began to develop and five years later, in 1994, they became husband and wife, during an exquisite wedding in Montreal, Canada.

The couple welcomed three children together over the years, a son named René-Charles, now 21, and twin boys named Nelson and Eddy, now 12.

But five years after their wedding, Rene was diagnosed with a type of skin cancer called squamous cell carcinoma – which had developed on a lymph gland in his neck.

Distraught Celine quickly put her career on hold so she could care for her husband. And after 38 rounds of chemotherapy and radiation, he was declared cancer-free in 2000.

But five years into their wedding, Rene (seen with Celine in 1999) was diagnosed with a type of skin cancer called squamous cell carcinoma. And after 38 rounds of chemotherapy and radiation, he was declared cancer-free in 2000

Unfortunately, the disease came back in 2013, and he was forced to undergo emergency surgery to remove a tumor in his throat. They are pictured in 2013

Unfortunately, the disease came back in 2013, and he was forced to undergo emergency surgery to remove a tumor in his throat. He was thankfully declared in remission once again after the surgery, but a year later, the couple confirmed that the cancer had come back.

He was thankfully declared in remission after the surgery, but a year later, the couple confirmed that the cancer had come back. In January 2016, Rene (seen in 2004) sadly lost his battle to cancer – and he passed away two days before his 74th birthday

In January 2016, Rene sadly lost his battle to cancer – and he passed away two days before his 74th birthday.

One month later, Celine broke down in tears as she returned to stage for the first time following his passing, as she gave a touching tribute to her late husband.

‘I understood that my career was in a way his masterpiece, his song, his symphony. The idea of leaving it unfinished would have hurt him terribly,’ she said during the concert, per People magazine. ‘I realized that if he ever left us, I would have to continue without him, for him.

‘I felt Rene on stage with me whether he was seated in his seat right there, in the balcony, backstage or at home with the kids. He’s always been on stage with me. And nothing will ever change that.

‘You know Rene always surrounded me with the very best people possible. I trusted him so much, =I never had the chance to worry about anything.

‘Now I guess it is only a natural impulse to constantly question myself. “Would he let the kids play with these toys?” and, “Is this song too fast? Is this song too slow? Don’t talk too much.”

‘It is pretty amazing that since he is no longer physically with me he is even more present. Rene was my very best critic. He never told me what I wanted to hear, he told me what I needed to hear.

‘Rene is the only man that I have known all my life. He always made me feel that we were on our first date, isn’t that amazing?

‘Never talking bluntly, and always impressing himself in a soft and gentle way. We were one. And nothing has changed we will always be one.’

She also spoke about his final moments during a 2019 interview, stating, ‘When I came home, it was very, very late. And I didn’t want to wake him up. The next morning, he was gone.’ They are pictured in 2002

She also spoke about his final moments during a 2019 interview, stating, ‘He called me before a show and gave me a little message, “I love you.”

‘When I came home that night, it was very, very late. And I didn’t want to come and wake him up to kiss him, to wake him up, and then he can’t find sleep again. And the next morning, he was gone.

‘The thing where I have a regret and I should not, is he did not die in my arms. But I think he died in my heart. If I hold onto this I won’t move on. There’s a reason for things, I have to give myself a reason to go on.’

When asked if Celine would after consider dating again during an appearance on the Today show in May 2021 – five years after Rene’s death – the singer said she wasn’t sure if she’d ever find love again.

‘I don’t know. I have no idea,’ she told the hosts. ‘But right this second, love is so big right now in my life, with my kids, with life itself.

‘I’m not thinking about a relationship and falling in love again. I don’t. Do I have to say that it will never happen anymore? I don’t know. I don’t know.

‘Losing my husband, for my kids to lose their father, it was quite something. I feel like Rene has given me so much through the years and still today.

‘I see my kids. I look at them – we live with him. We still live with him. He’s part of our lives every day, so I have to say that I feel very, very strong.’

Her brother passed away from complications of brain, throat, and tongue cancer two days after the death of her husband in a heartbreaking turn of events

Tragedy struck Celine for a second time in January 2016, when her brother, Daniel (pictured together), died of complications from brain, throat, and tongue cancer at age 59, just two days after Rene’s passing – in a heartbreaking turn of events

Tragedy struck Celine for a second time in January 2016, when her brother Daniel died of complications from brain, throat, and tongue cancer at age 59, just two days after Rene’s passing – in a heartbreaking turn of events.

‘Battling cancer for a few years, it’s in the uttermost discretion and surrounded by his family that Daniel Dion, 59, died today, January 16,’ his obituary read.

‘His last days were in the wonderful care of the doctors and personnel at Maison Adhemar-Dion, a palliative care center in Terrebonne Quebec.’

‘Taking in consideration the reserved character of their deceased brother, the family wishes respect and discretion from the media.’

Maison Adhemar-Dion was actually named after Celine’s late father, Adhémar, who had been treated there years earlier, when he too battled cancer.

Celine attended a memorial service for Daniel – who was one of her 13 siblings – just one day after her husband was laid to rest.

Celine attended a memorial service for Daniel – who was one of her 13 siblings – just one day after her husband was laid to rest. She is pictured at her husband’s funeral with her three kids

Entertainment Tonight reported at the time that she wouldn’t be at Daniel’s funeral because she was too ‘grief-stricken.’ The outlet reported: ‘She and her children (who are seen at Rene’s funeral) could not continue two more days of public mourning’

However, Entertainment Tonight reported at the time that she wouldn’t be at Daniel’s funeral because she was too ‘grief-stricken.’

‘She and her children could not continue two more days of public mourning,’ the outlet reported.

The singer later spoke out about losing two of her loved ones within days of one another to People, and she called it ‘perfect’ because her husband could ‘escort her brother.’

‘Rene escorted my brother. It was perfect,’ she said. ‘He took him under his wings. And he said, “You know, I’ll take good care of him.”‘

She also told Hello! magazine that she was coping with the two deaths by focusing on her work. She explained, ‘I’ve mostly thrown myself into my work, preparing my French album.

‘Not a question of silence, on the contrary, of over-activity. I was back on stage a month after Rene’s death. I wanted to get back up for my children, so they would be able to count on me, on this incredible force inside me.’

The pop sensation’s family tragedies continued after she lost her brother-in-law to the disease just eight months later

Cancer sadly look another one of Celine’s family members – her brother-in-law – eight months later. Her sister Liette’s husband, Guy Poirier (seen with Liette), passed away in August 2016, after cancer spread to his ‘lung, brain, and bones’

Cancer sadly look another one of Celine’s family members – her brother-in-law – eight months later. Her sister Liette’s husband, Guy Poirier, passed away in August 2016, after cancer spread to his ‘lung, brain, and bones,’ Toronto Sun reported.

Just before his passing, Celine spoke about how she was doing following the death of her husband and brother during an appearance on the Today show, and she said she was feeling ‘strong.’

‘I feel wonderful. I feel strong, I feel good,’ she said. ‘It’s been a journey. It’s been hard seeing the love of your life suffering for the last three years, it’s been really hard.

‘But millions of people are going through this, and I feel very strong because not only did he love me so much for many, many lives to come, he gave me three magnificent kids, so much knowledge, stability, and confidence.’

Her niece died from complications related to cystic fibrosis at age 16, and spent some of her last minutes in Celine’s arms

Years earlier, Celine faced another devastating blow when her 16-year-old niece – Liette and Guy’s daughter, Karine – died in her arms of complications related to cystic fibrosis. Celine is seen with Karine before her death

Years earlier, Celine faced another devastating blow when her niece – Liette and Guy’s daughter, Karine – died in her arms of complications related to cystic fibrosis. Cystic fibrosis is a genetic disorder that causes problems with breathing and digestion.

Before her death, Celine was very close with Karine, telling People that she would often take the little girl to the mall, where she’d let her buy ‘everything she wanted.’

But in 1993, when Karine was 16, her condition took a turn for the worse and she was left ‘in critical condition, barely able to breathe or swallow.’

‘I had her in my arms,’ Celine recalled to the outlet of her final moments. ‘I started to sing softly in her ear, and out of nowhere her eyes closed.

‘I looked at my mom, who was massaging her feet because her circulation didn’t work, and nodded, “OK, it’s happening.” One tear came down Karine’s cheek, and then she went.’

After Karine’s death, Celine became an ambassador for Canadian Cystic Fibrosis Foundation.

Celine spent years battling fertility struggles and revealed she suffered from a heartbreaking miscarriage in 2010

After welcoming their first son, Celine and Rene wanted to have more children. But they struggled to conceive for many years, and eventually had to turn to in-vitro fertilization. Celine and Rene are seen with their son in 2009

In 2010, the My Heart Will Go On songstress spoke out about her fertility struggles during an appearance on Oprah , and she revealed that she sadly suffered from a miscarriage

‘We did [have] a miscarriage. We tried four times to have a child. We’re still trying. We’re on the fifth try. And I tell you, if five is my lucky number, this fifth try has got to come in,’ she said at the time. ‘It’s life. A lot of people go through this’

After six failed rounds of IVF, the couple announced that they were expecting twins, who were born on October 23, 2010. She is seen with her three kids in May

After welcoming their first son, Celine and Rene wanted to have more children – but they struggled to conceive for many years, and eventually had to turn to in-vitro fertilization.

In 2010, the My Heart Will Go On songstress spoke out about her fertility struggles during an appearance on Oprah, and she revealed that she sadly suffered from a miscarriage.

After six failed rounds of IVF, the couple announced that they were expecting twins, who were born on October 23, 2010.

Celine suffered from a series of health problems over the years, and has now been diagnosed with SPS

Celine (seen in 2012) faced other health struggles throughout her four-decade-long career. And in February 2012, she almost lost her ability to sing when she was diagnosed with ‘weakness in her right vocal chord’ after suffering from a viral illness

She was put on eight weeks of vocal rest and was forced to postpone her tour, but returned to the stage in June of that year. She is seen in January 2012

In 2018, she was forced to cancel more shows after she began suffering from Patulous Eustachian tube dysfunction – a disorder that causes the valve in your ear to remain open. It was thankfully fixed through surgery. She is seen in August 2018

Celine faced other health struggles throughout her four-decade-long career. In February 2012, she almost lost her ability to sing when she was diagnosed with ‘weakness in her right vocal chord’ after suffering from a viral illness.

She was put on eight weeks of vocal rest and was forced to postpone her tour, but returned to the stage in June of that year.

While it was certainly scary for the singer, she later told the Today show that she was prepared to sacrifice her career if she had to.

STIFF-PERSON SYNDROME: INCURABLE NEUROLOGICAL CONDITION THAT LOCKS THE BODY

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 only about one or two in a million people – and 330 people in the US are diagnosed each year. 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.

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 don’t depend on my vocal cords. I don’t depend on my success and my singing,’ she explained.

‘Don’t get me wrong. I love what I do. But I don’t hold on to that. When you have children, you have accomplished a lot.’

In 2018, she was forced to cancel more shows after she began suffering from Patulous Eustachian tube dysfunction – a disorder that causes the valve in your ear to remain open.

At the time, she wrote on Facebook that it was causing ‘hearing irregularities and making it extremely difficult to sing.’ Thankfully, she was able to get surgery to repair the problem.

On Thursday, Celine shared the sad news that she had been diagnosed with SPS, a disease that often leaves people unable to walk or talk.

While there is no cure for SPS, there are treatments to slow down the progression, and Celine revealed she is doing all she can to minimize the symptoms.

‘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 on Instagram.

‘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 its 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.

‘Unfortunately, these spasms affect every aspect of my daily life sometimes causing difficulties when I walk and not allowing me to use my vocal chords 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. 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 its 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 per cent 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.’

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 only about one or two in a million people – and 330 people in the US are diagnosed each year. The progressive disease sees patients’ stiffness increase over time and can lead to them needing to use a wheelchair.

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.

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.

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