‘I was told I had five years left to live in 1993’

Naima, pictured here at the Hotel Le Mirage in Morocco, has defied all the odds to live with MND for decades (Picture: Supplied)

When Naima Chakkour found out she had a terminal illness, she initially didn’t tell a soul. The mum-of-four carried on as normal despite the ‘smell of death’ she felt followed her.

Naima had been diagnosed with Motor Neurone Disease (MND), an incurable illness which had begun to attack her nerves. Her muscles were destined to deteriorate until they reached a state of paralysis. 

‘The first thing that came to my mind was my children,’ Naima, 64, tells Metro from her home in South Kensington, London.

‘Nothing else mattered. When I heard those words “five years left to live”, all their faces popped up in front of me. My youngest was four and my oldest was nine.

‘I was thinking of them.’

Before her diagnosis, Naima (right) was an active runner, traveller and very busy mum (Picture: Supplied)

Naima was always on her feet before her diagnosis in 1993. She was kept busy by her daughters Sawsan and Sabrina and sons Adam and Mehdi.

Raised in the small fishing town of Asilah in Morocco, the keen runner had moved to London when she got married. But by her thirties, housewife Naima had begun to lose strength in her hands. Alarm bells rang when she crouched to tie her son’s shoelaces and found the task impossible. 

After several back-and-forth visits to the doctor, Naima received her MND diagnosis in 1993 and felt she was lost in a ‘huge, dark cloud.’

‘I suffered in silence on my own,’ she says. ‘During the day I was completely normal but at night I would cry myself to sleep for a very long time.’ 

Initially, Naima’s MND diagnosis was easy to hide. She padded her shoulders and stopped wearing lower-cut tops after her muscles weakened and her neck drooped. And when the muscles on her chin caused her lips to thin, she used a light shade of lipstick to draw less attention to it.

Naima feared telling people about her life-changing MND diagnosis (Picture: Supplied)

But other times were more difficult. Naima remembers collecting her daughters from a friend’s birthday party in a ‘very posh’ London venue. By this point, MND had caused her voice to become slurred and slow. To Naima’s horror, she was stopped by doormen at the party who mistakenly thought she was drunk.

She adds: ‘Aside from sharing the news with my brothers, I kept my diagnosis of MND to myself until the symptoms became impossible to hide, which was approximately five years after I was diagnosed. As someone who prides themselves on being self-reliant and dislikes showing vulnerability or asking for help, opening up about it was very difficult.

‘When I finally did share, the reactions were mostly of shock and sadness. My friends were stunned, often expressing disbelief with comments like, “But you’re too young!” – a sentiment that, while well-meaning, wasn’t particularly helpful.’

In 2005, Naima took her children away on holiday at Christmas. She was walking assisted at this point but not yet in a wheelchair. When the family returned from the trip, their London home was noticeably more empty. It emerged Naima’s husband had taken his belongings and left.

Naima and her brother Abdesam and (right) with her brother Ahmed. Both supported her hugely after her husband left the family (Picture: Supplied)

The couple had grown distant before her MND diagnosis, but his decision to abandon his wife and children still felt like a huge betrayal.

‘I felt so alone,’ Naima reflects. ‘And ashamed at thinking “I’m sick and he’s leaving me.” As a family, we had to find strength in each other to move forward.’ After her husband left, Naima was supported by older brothers Abdeslam and Ahmed as well as her close friend Habiba. 

Today, Naima describes living with a terminal illness as like ‘moving into an anteroom – a place somewhere between life and death.’ When she sleeps, she dreams of running. When her mind wanders during the day, she imagines driving across London with songs from her favourite artists – Demis Roussos, the Bee Gees, Cat Stevens – blaring. 

‘I have lost everything,’ Naima explains. ‘My mind is the only thing I have left. The fear of the future and how it will end for me is always on my mind. The biggest obstacle I have in life is those dark thoughts.’

But Naima is also determined to create a positive legacy, inspired by the likes of Doddie Weir and Stephen Hawking who did so much for MND sufferers. 

Stephen Hawking was diagnosed with MND just before he turned 21 (Picture: Getty)

 Doddie Weir’s diagnosis came after his rugby career (Picture: ANDY BUCHANAN/AFP via Getty Images)

She’s documented her extraordinary life story in new book Undeterred, out today. All proceeds will go towards the My Name’5 Doddie Foundation, a charity founded by the late Scotland rugby player Doddie Weir. 

As she now struggles to speak for long periods or use her hands, Naima wrote all 30,000 words of Undeterred using a device fitted to her neck which plugged into her laptop. The book explores key chapters in her life; such as her upbringing in Morocco, her journey to forgive her ex-husband and a near death experience in 2012.

Naima adds: ‘I don’t want people to feel sorry for me, this [Undeterred] is about empowering people. I want them to think, “wow, if she can fight, if she can survive this, then why can’t we?” I hope that resilience will resonate with anyone who faces their own battles in life, whether that battle is MND or something else.’

At her home, which is adorned with beautiful artwork and oriental furniture, Naima is joined by her daughters Sawsan and Sabrina as well as her friend Gerald as they tell Metro about her story of survival.

Naima and her daughters Sawsan (left) and Sabrina (right) (Picture: Supplied)

Naima’s four grandchildren bring her a huge feeling of joy (Picture: Supplied)

‘Despite her illness, mum has been there for us every single minute of every single day,’ Sawsan, 39, explains.

‘We never had a sit down where she said “Hey guys, I’m dying, I have MND.” We kind of just watched her body get weaker, it was almost a natural progression. It wasn’t until we were much older that we realised it was MND. Even today, the terminal side hasn’t hit us. We just keep moving forward like she does.’

Sabrina, 37, adds: ‘I think we were lucky there was no social media when we were younger, nothing for us to really understand what was wrong with our mum. We couldn’t Google the life expectancy of MND or anything.

‘We never saw mum crying because of her illness; she’s shaped us into being incredibly strong. And our kids would be lost without her, she plays such a vital role in their lives.’

Whilst she has lived a life on the edge of death since her diagnosis in 1993, Naima has never allowed herself to be defined by MND. The Londoner is proud to have seen her children graduate, get married and have children. Her doctors suspect she is one of the world’s longest ever survivors of MND. 

Naima asleep with an oxygen mask as her granddaughter Sofia lies beside her (Picture: Supplied)

(left) Naima with her close friend and carer Habiba and (right) Naima with her sons Adam and Mehdi on a beach in Morocco (Pictures: Supplied)

Naima says: ‘My MND case might be unique, but my fight isn’t. Everybody in life has that choice to fight. My main goal [with writing Undeterred] is to give hope to other people who have MND. I want to encourage them to keep fighting. But my second goal is to leave something for my children, a legacy.

‘I understand that MND manifests differently in each case, with some forms being more severe due to their rapid progression. I am deeply aware of how fortunate I am that my condition has progressed slowly.

‘Thirty years ago, I was given a prognosis of just five years to live, yet here I am today, defying the odds. I chose to fight, to hold on to hope, and to refuse to give up. I firmly believe that my mental strength has played a pivotal role in my journey—without it, my story might have been very different.’

Undeterred: My MND Story by Naima Chakkour, with a foreword by Felipe González, former Prime Minister of Spain, is out November 26. Click here to get a copy.

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