Britt Ekland, 77, describes agony of finding out her grandchild had deadly illness

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Britt Ekland is wearing jeans. ‘Tight ones, because I can,’ she says defiantly.

She turns 78 next month, but will she be succumbing to the lure of elasticated waists and beige hand-knits as she approaches her ninth decade? Of course not!

‘Yes, jeans are for grannies!’ she cries. ‘I think the whole argument that you can’t wear something because you’ve reached a certain age is out of the window today.

‘Women can wear pretty much what they want at any time of their lives.’ Britt, leggy as a colt, is wearing jeans for a specific reason. 

She is supporting the genetic disorders charities — 149 of them have benefited over the past 25 years — who this month will be urging us to wear Jeans For Genes, at school, at work and at home, to raise money for those with disorders such as sickle cell anaemia, Huntington’s and muscular dystrophy.

Britt Eckland, who is 78 in a few weeks, opened up about her grandson Lucas, who suffers from adrenoleukodystrophy (ALD) a rare brain disorder which can lead to sight loss, inability to walk and move, and ultimately premature death, on average before the age of ten. Pictured: Britt with the little boy, who is three

Britt Eckland, who is 78 in a few weeks, opened up about her grandson Lucas, who suffers from adrenoleukodystrophy (ALD) a rare brain disorder which can lead to sight loss, inability to walk and move, and ultimately premature death, on average before the age of ten. Pictured: Britt with the little boy, who is three

But Britt has a specific and personal interest in one condition. 

The younger of her two grandsons, three-year-old Lucas, has a deadly genetic disease that affects one in 15,000 people; boys more severely.

Called adrenoleukodystrophy (ALD), it is a brain disorder that destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow us to think and to control our muscles — typically leading to sight loss, inability to walk and move, and ultimately premature death, on average before the age of ten.

Practical and resourceful, former Bond girl Britt — most recently on our screens in BBC series The Real Marigold Hotel — does not waste energy on outpourings of emotion, but she clearly adores her grandson Lucas and his brother Cash, seven — sons of Alison and Nicholai Adler, Britt’s son from her relationship with record producer Lou Adler.

Britt was at the hospital in Los Angeles to greet Lucas hours after he was born on April 8, 2017, weighing a healthy 6lb 7oz, and with no signs that anything was amiss.

‘He was just beautiful, wrapped up in a blanket like a little burrito, with masses of dark hair,’ she says. 

‘The insidious thing about this illness is that your child is just like any other until symptoms occur. 

‘Lucas hit all his milestones. You’d never guess in a million years that anything was wrong with him because there are no visible clues.’

She, however, was unaware that results of screening tests — routine in California but not yet in the UK — which arrived a couple of months after Lucas’s birth, revealed he had ALD. It was not, in fact, until last year that she was told the devastating news.

Britt is supporting the genetic disorders charities — 149 of them have benefited over the past 25 years — who this month will be urging us to wear Jeans For Genes, at school, at work and at home, to raise money for those with disorders such as sickle cell anaemia, Huntington's and muscular dystrophy

Britt is supporting the genetic disorders charities — 149 of them have benefited over the past 25 years — who this month will be urging us to wear Jeans For Genes, at school, at work and at home, to raise money for those with disorders such as sickle cell anaemia, Huntington’s and muscular dystrophy

‘I was staying with Nicholai and Alison in the June and one night, after the children had gone to bed, they said: ‘Mum, we need to speak to you.’ Lucas was two; an extraordinarily happy little boy.

‘He’d always been a little bruiser; so cute and with boundless energy. He’s much more active, in fact, than his big brother, so I had no idea at all that anything was wrong.

‘It’s only when I look back now that I wonder if Alison was a bit more protective of him than she was of Cash. We’re a demonstrative family, but she seemed to kiss and hug Lucas more than ever.

‘And on that evening when she told me the news I could see she’d been crying. I didn’t know what to think. My heart sank. 

Then she said, “We didn’t want to talk to you before we’d done all our research, or give you information before we knew everything ourselves.”

‘They’d known for two years before they told me and I can understand why they wanted to be certain of all their facts first. 

‘I think they also wanted me to have a happy relationship with Lucas without being too fearful.

‘It was a huge shock. Lucas is such a wild thing, like a little typhoon, and it was so difficult to come to terms with the fact that such a beautiful, entertaining, lovely little boy was facing something so dreadful.

‘I’d just been looking after him — I was working in LA at the time — and when Alison and Nicholai went out for the day I’d take all the cushions off the outdoor furniture and put them on the ground so he could play safely.

Lucas and his brother Cash, seven  are sons of Alison and Nicholai Adler, Britt's son from her relationship with record producer Lou Adler. Pictured: Britt with Adler and Nicholai in 1974

Lucas and his brother Cash, seven  are sons of Alison and Nicholai Adler, Britt’s son from her relationship with record producer Lou Adler. Pictured: Britt with Adler and Nicholai in 1974

‘Looking back, I was glad that my motherly instincts told me to do that in case he fell, because Alison told me that evening: ‘We have to be really careful with his head.’ Apparently, there is evidence that head injuries can bring on symptoms.’

Family photos chart Lucas — mischievous and brown-eyed — riding his scooter, in fancy dress and hugging his big brother. 

‘There is no indication, from the energy and vigour with which he attacks life, that he has this deadly condition.

And this is the point: for years the disease can be asymptomatic. But once the symptoms start to develop — typically when a child is four — it is usually too late to do anything to stop the decline into early death.

ALD causes the nerves in the brain to malfunction, so speech, reasoning and mobility are lost. 

Once symptoms start to occur, boys with the condition usually live just two to four years because there is no treatment for the disease once it has started to manifest itself.

For Lucas, however, the outlook is promising because he has regular six-monthly MRI scans, and blood tests every three months, which can detect the brain lesions that presage the onset of ALD.

Then, before symptoms even start, a bone marrow transplant is very likely to halt it in its tracks. 

It does this by replacing damaged blood-forming cells (stem cells) with healthy ones. 

Through these healthy cells, the body is able to break down fat-based substances that cause the brain to malfunction. 

Britt spent almost the entire Bond movie The Man With The Golden Gun in a bikini, alongside Roger Moore

Britt spent almost the entire Bond movie The Man With The Golden Gun in a bikini, alongside Roger Moore 

Success rates for such transplants, improving all the time, stood at around 95 per cent in 2016.

‘It’s quite remarkable — miraculous, really — how the bone marrow transplant works,’ says Britt, ‘And although it’s not a cure as such, because the progress of the symptoms is stopped the outcomes are incredibly positive.

‘Lucas will be able to have a perfect life. He can become a doctor, a lawyer, a plumber, a motorcycle racer. 

Once he’s had the stem cell transplant he can do anything he wants. And that’s all because he had that vital screening at birth,’ she says.

‘But for the boys whose symptoms aren’t caught early through an MRI scan, it’s a very different story. These children are dying.’

Britt, as patron of Alex, the UK’s leukodystrophy charity, is campaigning for early diagnosis to be routine here.

‘It’s such a devastating disease it’s hard even to speak about it,’ she says. ‘I’m working on getting through to the Government so they’ll put it on the UK screening list because it’s the difference between life and death.’

Although Lucas’s long-term prognosis is good, his young life is punctuated by hospital visits. 

Scans and blood tests are routine and he faces the prospect of months in hospital having a bone marrow transplant.

‘The thought of the transplant is bleak,’ admits Britt. ‘And this is a very nervous week for all of us because tomorrow Lucas is due a routine MRI scan, and as he is approaching his fourth birthday — the age when symptoms of ALD typically start — we’re all holding our breath that the scan does not show lesions on his brain.

‘We pray that he is clear but Alison will call me immediately if something is seriously wrong. 

‘If it’s good news, she’ll send me a funny photo of Lucas eating a vegan ice cream or causing some mischief.’

She is resolutely hopeful; determinedly optimistic. ‘I try not to be a miserable, sad, old woman. 

‘I have to be upbeat about it, as well as supportive. Nicholai and Alison are amazingly strong.

‘And it’s so fortuitous that Lucas was screened at birth because the routine screening in California had only come in three months earlier. He’s already been through a lot for a little boy. 

‘Since he was three months old, he’s had MRI scans every six months. They’re not painful, but it’s disconcerting for him.

‘The machine makes a loud noise and he wears earplugs and has his baby iPad to distract him.

‘And when he has blood taken that’s horrifying. He goes every three months and last week he went Alison said he was amazing. He only whimpered a little bit when the needle went in. He knows he has to do these things to keep him well, and he’s such a strong, happy little chappy.’

Britt also dated singer Rod Stewart between 1975 to 1977 but the pair never married

 Britt also dated singer Rod Stewart between 1975 to 1977 but the pair never married

Swedish-born Britt, celebrated for her films — including The Wicker Man and Get Carter — was first married to actor comedian Peter Sellers, with whom she has a daughter, Victoria, 55. 

Then came her relationship with Lou Adler, which produced son Nicholai. 

Her youngest son, Thomas Jefferson, (TJ) 32, was born during her second marriage to Stray Cats drummer Slim Jim Phantom — 19 years her junior — that ended in 1992.

Since then, she has lived alone; either in London or LA, or in her rambling house in rural Sweden (where she is now), although she still has plenty of male admirers.

Britt is thrilled — in her no-nonsense, unsentimental way — to be a granny. Cash and Lucas call her Farmy (their childish corruption of the Swedish farmor, which means father’s mother). 

‘I waited the longest time of anyone to become Farmy!’ she cries. ‘I’m not a conventional baking-cookies granny, but I’m inventive. Being an actress helps with story-telling.

‘When Cash came along seven years ago I was lucky to be working in LA and I could be the kind of grandma who spent whole days with him. 

Her youngest son, Thomas Jefferson, (TJ) 32, was born during her second marriage to Stray Cats drummer Slim Jim Phantom — 19 years her junior — that ended in 1992

Her youngest son, Thomas Jefferson, (TJ) 32, was born during her second marriage to Stray Cats drummer Slim Jim Phantom — 19 years her junior — that ended in 1992

If his mum and dad needed a break, I’d go over at 8am and stay all day. 

I fed him breast milk that Alison had expressed. I had my last child — TJ — at 46, and nothing much had changed in childcare.

‘My son and daughter-in-law wanted me to go [alongside ex Lou and his wife Page, as well as Alison’s mum and dad] to grand-parenting lessons. Very American! Very amusing!

‘They were very into swaddling and we had a dummy baby to practise on. Then they told us we should carry the baby like an American football under our arms. We all looked at each other and thought: ‘Hmmm.’

‘It was very funny but, no, I didn’t carry Cash like an American football. And swaddling is terrible. Cash went mental. 

It took away all his movements. But I’m a granny who gets down and dirty with the children. 

And I’m very lucky because I can get down and get up again because I’m very flexible! I’ve been doing Pilates all my life and it keeps me fit.’

When lockdown happened in the UK, Britt was touring in comedy thriller The Cat And The Canary.

She holed up in London but after seven weeks, when the first flights began again, she took a plane — the only one going in vaguely the right direction — via Finland to Sweden.

Sweden refused to go into lockdown during the pandemic but Britt has been scrupulous. 

She says: ‘I don’t go out unless I absolutely have to. I haven’t even eaten out during the pandemic – and if I go to the stores in my village I’m the only one wearing a mask. I never take it off!’

She pootles round her home with her rescue dog, Bowie, trotting at her side. Britt reveals that Bowie has helped her with the depression that has beset her, intermittently, since coronavirus swept the world. 

‘Lockdown has been an emotionally difficult time for me,’ she says. Aside from worrying about Lucas, there was her job.

‘Everything was taken away from me overnight, so yes, there was depression from time to time. You don’t want to get out of bed, brush your teeth; get dressed. 

‘I can go for two days without a shower (although I do put on fresh underwear).

‘I’m Swedish. We always have depression!’ she adds. ‘But it’s not fun to be around people who are depressed, so you deal with it.

‘Bowie helps. She keeps me on an even keel. You have to get up, walk her; make sure she does her business. That all helps.’

She has missed seeing the grandchildren. Nicholai, Alison and the boys were due to stay at her house in Sweden for the summer, then meet her in Blackpool during her tour with the play. 

It conjures an incongruously homely image: Britt, two little grandsons, a bucket and spade and perhaps a donkey ride along the sands. But of course coronavirus put paid to that.

When I last saw the grandchildren in person it was at Thanksgiving last December,’ she says.

‘We had a mini Christmas in LA before I left for London to do the play. Now we’re doing what everyone else has to do. Zoom calls and FaceTime. Every other day. I try to make it interesting. 

Nicholai, Alison and the boys were due to stay at her house in Sweden for the summer but the coronavirus pandemic scuppered the plans. Pictured: Britt with Nicholai when he was aged just seven months

Nicholai, Alison and the boys were due to stay at her house in Sweden for the summer but the coronavirus pandemic scuppered the plans. Pictured: Britt with Nicholai when he was aged just seven months

‘I take them around on a virtual tour of my property. I show them that everything’s here as they remembered it. 

‘I drive around on my tractor and show them the apple and cherry trees.

‘I miss being with them. Grandchildren are more amusing than your own children because you don’t have full-time responsibility.’

I’m diverted by the idea of Britt, the apotheosis of glamour, who spent almost the entire Bond movie The Man With The Golden Gun in a bikini, now chugging through her orchards on her tractor, being a maverick gran.

She clearly loves being ‘Farmy’ to her two little grandsons. It might be her most fulfilling role yet.

Jeans for Genes week is from September 14 to 20. 

This year’s T-shirt, modelled by Britt, features Bugs Bunny. To get involved or buy a T-shirt, go to jeansforgenesday.org.

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