IN A ROLL OF THE DICE (Linen Press; £9.99), Mona Dash explains the consequences of passing on faulty genes to her two sons and why she has relied continually on her faith and recital of the Hindu Maha Mrutyunjaya mantra (religious chant).
As the book’s subtitle makes clear, hers is “a story of loss, love and genetics”.
For good reason, it is commanded by two well-known authors. Neel Mukherjee has said, “It’ll go straight to your heart”, while Bidisha calls it “powerful, important and fearlessly honest”.
Mona, who comes from Odisha in eastern India, now lives in London where she works in software sales for a global technology company. She has dedicated her “memoirs” to her husband Kaustubh, and her two sons.
The first, Akshyat, was born in Kolkata on October 22, 1999, but died, aged eight months, on June 22, 2000, after inheriting a faulty gene, known as SCID – severe combined immunodeficiency – from his mother. His parents discovered too late that his white blood cells were unable to fight infection.
Since Mona was working for a UK company, she and her husband were able to move to London in March 2001, where her second son, Krish, was born prematurely on February 8, 2007.
He, too, was born with the same defective gene. But because the disease was caught immediately after birth, he was transferred urgently to the Great Ormond Street Hospital (GOSH) for children, where “the tiniest baby we had seen” came under the care of Bobby Gaspar, professor of paediatrics and immunology.
Thanks to a transplant of vitally needed bone marrow from his father – which Krish received at six weeks- he is today a normal healthy 12-year-old. An enthusiastic cricketer, he was present at his mother’s book launch at Waterstones Islington last week, where he announced: “I would like to be a fast bowler like Jofra Archer.” Watched by his parents and the doctor who saved his life, he gave an impressive demonstration of his bowling action.
Gaspar, who has written the introduction to the book, says he wants all 800,000 babies born annually in the UK to be tested for SCID as a matter of routine. It is a very rare disease, affecting 15 to 20 babies a year, but if not caught early, it can prove a death sentence.
Mona said she wrote the book, which begins with an account of the death of her first son, “to give hope, inspire others and create awareness of the disease in case it can help somebody.
“The only treatment is a bone marrow transplant.
“Somebody read the book and said, ‘I feel sorry for you.’ I said, ‘You don’t need to because I have gone through so much. It made me a different person. It has shaped me very well. And I am a strong believer. There was a lot of praying that I did. All the stuff from the ‘Gita’ and ‘Maha Mrutyunjaya Mantra’. All that really helped – and, of course, medical care.”
That side of Mona’s story was taken up by Gaspar, who “spends 40 per cent of his time seeing patients in the hospital and 60 per cent in the laboratory developing gene therapy treatments for complex diseases of the immune system”.
This is what he told Eastern Eye: “To fight any infection, your body has special white cells in the bloodstream. Those white cells grow from your bone marrow and the growth of those cells is governed or determined by specific genes. There are certain diseases, where because a gene is missing or a gene does not work, those white cells don’t grow and those white cells don’t function.
“And that is essentially what SCID is – a condition where a gene is missing and the white cells don’t grow.
“What happens in the first few months is the mother passes on through breast milk some protection, some antibodies. That protects the baby for a few months. When that fades in normal children, they will start to make their own. And they will have their own immune function.
“In a normal baby, the white cells will kick into action and get rid of that cough or cold, that virus. A baby with SCID can’t do that. So, when the mother’s protection goes, the baby has got nothing to protect it. Even the most common infection can be fatal.
“Usually what happens is they get an infection, they go in and out of the hospital, or see their general practitioner. They are put on medicines, but they can’t fight the infection properly. And because they don’t have any white cells and usually the parents don’t know anything about it- it is devastating when it happens.
“A lot of doctors will not have seen the disease. They think it is just like a normal infection. By the time they get to make the diagnosis, it may be too late.
“Sometimes the first time we see these babies are when they are on intensive care. And it is too late to be able to do anything.
“The best way to diagnose them – and this is something we have been campaigning for – is that all babies should be tested for this condition. If you can diagnose the condition at birth, you can protect the children and institute some treatment quite quickly.
“We do nationally screen for certain conditions at birth, but not this. In the US they are now starting to screen for it; in Germany, they are going to screen for it, and we are campaigning to screen for it in the UK as well. It’s a cheap test – a couple of pounds per baby.
“We know if you leave children undiagnosed, then roughly half or more of the children will die from the disease. If you screen them and treat them before they get an infection, then you have got over 90 per cent survival. So you can save all these children as a result of diagnosing them at birth.
“The cells arise from the bone marrow. And what we do is to give the children new bone marrow – somebody else’s bone marrow that can grow in their immune system. That works best when the children are in good shape.
“That’s what happened with Krish – he had a one-off treatment and that will repair his immune system. Because of his brother who died from the condition, as soon as Krish was born, he was diagnosed. He also had SCID. So we then took bone marrow from his father and gave it to him. He had it when he was six weeks old.
“In some families, because of the history, you can diagnose second or third babies at birth but in many families, there is no history. Then it will be a child having a problem for the first time.
“That’s why we are campaigning to screen all babies.”
Starmer is facing a Labour backbench revolt over plans to reform special needs support in schools without guaranteeing existing legal rights. (Photo: Getty Images)
KEIR STARMER is facing a backlash from Labour MPs over plans to reform special educational needs and disabilities (SEND) support, after ministers stopped short of guaranteeing legal rights for parents.
Education Secretary Bridget Phillipson said the government was committed to reforming the current system, which costs £12 billion a year. However, she did not confirm if legally enforceable rights, such as those provided by education, health and care plans (EHCPs), would remain.
Early education minister Stephen Morgan told Times Radio: “We want to make sure that every child gets the support that they need,” but did not rule out changes to current entitlements.
Senior Labour MPs told The Times the plans risk repeating mistakes from past welfare reforms. “We’re all in favour of reforming the system but that cannot be driven by saving money and taking support away from children,” one MP said.
The government’s proposals, expected in the autumn, focus on early intervention and better support in mainstream schools. Ministers say the aim is not to cut costs but to improve outcomes. They have pledged £750 million for new specialist facilities and over £1 billion for high needs budgets.
Campaigners say EHCPs remain essential for securing support. Celebrities and groups including the National Autistic Society warned in The Guardian: “Without statutory support, underpinned by necessary extra resources for schools, it’s extremely unlikely that ministers will achieve their aim.”
Phillipson told the BBC the current system was “too adversarial” and “too bureaucratic,” adding: “We need to just take a step back and think about how do we build a better system.”
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Londoners faced a wet and stormy start to the week
Heavy rain and thunderstorms drench London at the start of the week
Temperatures set to rise with highs of 31°C expected by Thursday
Heatwave could be declared by Friday if warm conditions persist
Night-time temperatures to remain high, increasing discomfort
UV and pollen levels forecast to be very high across the south
Thunderstorms soak London before summer heat returns
Londoners faced a wet and stormy start to the week as heavy rain and overnight thunderstorms swept through the capital. Monday morning saw widespread downpours, leaving commuters reaching for umbrellas and Wimbledon ticket hopefuls queuing in ponchos.
The unsettled conditions followed a burst of thunderstorms on Sunday afternoon and continued into the early hours of Monday, prompting caution across the city. The Met Office has not issued a formal weather warning for thunderstorms, but conditions remain unstable.
Temperatures expected to climb through the week
According to the Met Office, Monday will gradually clear, with sunny intervals forecast later in the day. Temperatures are expected to peak at around 23°C, before rising steadily through the week.
By Wednesday, temperatures could reach between 25°C and 28°C in parts of the country. However, for a heatwave to be officially declared, these thresholds must be met for three consecutive days.
Senior Met Office meteorologist Marco Petagna explained: “Although the temperature will be reaching the criteria, we probably won’t actually reach an official heatwave until around Friday.”
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Heatwave likely by Friday, with weekend highs in low 30s
The mercury is forecast to hit 30°C or above by Friday and Saturday, with some areas potentially reaching the low 30s. Conditions are also expected to become more humid towards the weekend, making nights increasingly uncomfortable as temperatures are not likely to fall below 15°C.
Petagna noted that while it will be hot, the UK is expected to avoid the extreme heat experienced in southern Europe, where parts of Spain and Portugal have seen temperatures soar into the mid-40s.
UV and pollen levels also rising
In addition to the heat, very high UV and pollen levels are expected across southern parts of the UK later in the week. The Met Office has advised the public to take precautions during peak hours of sunlight.
The long-term outlook remains uncertain, with some forecasts suggesting the heat may ease early next week, while others predict it could persist into the following weekend.
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Lisa Nandy, Steve Reed, René Olivieri and Hilary McGrady at a National Trust event marking its 130th anniversary
THE National Trust, which is seeking to broaden its appeal to British Asians, is marking its 130th anniversary with a renewed commitment to restoring nature and widening access under a 10-year strategy.
Its director-general, Hilary McGrady, also aims to inspire more people to get involved in caring for the country’s natural resources.
The National Trust was founded in 1895 by three Victorian philanthropists – Octavia Hill, Sir Robert Hunter and Canon Hardwicke Rawnsley – to “promote the permanent preservation for the benefit of the nation of lands and tenements (including buildings) of beauty or historic interest”. With more than “5.38 million members, 11,000 staff and 61,000 volunteers, it is now Europe’s largest conservation charity, caring for over 250,000 hectares of farmland, 890 miles of coastline and 500 historic properties, gardens and nature reserves, for everyone, for ever”.
It wants more British Asians to apply for jobs with the Trust or offer to become volunteers. Many of its historic properties have Indian connections.
McGrady, who has been with the Trust for 20 years, set out the organisation’s aims: “For 130 years, the National Trust has responded to the crises and challenges of the time. Today, nature is declining before our eyes and climate change is threatening homes and habitats on a colossal scale. Meanwhile, millions of people can’t enjoy the benefits that green space and heritage bring.
“So, we will ramp up our work to restore nature, both on our own land and beyond our boundaries. We’ll work to end inequality of access to green space and cultural heritage. And we will inspire millions more people to take action to protect the things we all need to thrive.
“Our charity’s founders were passionate campaigners who recognised the threats to our natural and cultural heritage, and, against the odds, did something about it. That same boldness is needed today. The Trust is uniquely placed to do something about these challenges and it’s why we are setting ourselves these ambitious but much-needed goals.”
At a recent reception to mark the Trust’s 130th birthday in College Gardens, Westminster, the director general asked guests to close their eyes and imagine their favourite idyllic locations.
“You need to know the National Trust is here to look after it, to support it, to stand up for it, to stand up for the right for everyone to have the kind of access to the beauty and the nature that you’ve been thinking about,” McGrady said.
She was “incredibly proud” of what the Trust had achieved “from the very days where there was just a glint in Octavia’s eyes. But I also want you to think about the legacy – not just what we’ve achieved so far, but the legacy we want to leave for our future, for your children, your children’s children, and far beyond,” she added.
She pointed out: “Our historic fabric in our towns and our cities is under massive threat, because we’ve no money to be able to upkeep them. Local authorities are under real pressure. People living in cities – 40 per cent of them – have no access to green or blue space, and so that connectedness that is so vital for the care of nature is being broken.
“And, of course, climate change is affecting everybody’s life – and anyone who doesn’t think it, please just look at the flooding, look at the heat damage, look at our landscapes. These are new challenges, and the Trust is going to step up and face them again.
” She declared: “We’re going to restore nature. We’re not just going to stop the decline. We’re going to restore it.”
McGrady said: “We’re going to move more and more into cities.” “We’ve just done that at Castlefield,” she added, referring to the transformation of a Victorianera steel viaduct transformed into a green “sky garden” in the heart of Manchester.
She also spoke about a landscape project in Belfast: “We’ve just acquired an amazing bit of divis on the edge of Belfast that will make a massive difference to the north of the city.”
She paid tribute to the people who had built the organisation over 130 years: “I stand on the shoulders of many, many of those giants, and they’re the people who built an institution that is much loved, that is much respected and is really trusted, which in this day and age, is a rare and a precious thing I will fight to protect to the death.
” She concluded: “I hope that Octavia – if she’s looking down on us now – will be pleased to see the spirit of the National Trust remains and that we remain for everyone, forever.”
McGrady was followed by Steve Reed, secretary of state for the environment, food and rural affairs, who waved his National Trust membership card: “We all have a special place we love to visit. For me, it’s Sissinghurst Castle in Kent. I love the beautiful gardens designed by the writer and poet Vita Sackville-West and her husband Harold Nicolson, which remain popular today.”
He expressed the Labour government’s support for the Trust: “I look forward to working with the National Trust to develop this work and open up more of our beautiful countryside for everyone to enjoy.”
He said: “Nature underpins everything: our economy, our communities and our livelihoods. But we have become one of the most nature-depleted countries in the world. Restoring nature is a key pillar of the government’s plan for change.
“I’ve just arrived back this afternoon from the UN Oceans Conference in Nice. I was proud to announce a consultation on banning bottom-trawling in our marine protected areas. We can’t go on wiping out precious marine habitats, just because they’re out of sight beneath the sea.
“And yesterday, my colleague Matthew Pennycook announced that the government will update national planning policy to ensure swift bricks are incorporated into new buildings. They make a massive impact on expanding bird populations. We will make sure that now happens in new developments right across the country.
“We will create nine new national river walks, plant three new national forests and support communities to create new parks and green spaces in their neighbourhoods. We’ve already announced the first new national forest between the Cotswolds and the Mendips which will see 20 million trees planted in the coming years.
“It’s a national scandal that our rivers, lakes and seas are choked by record levels of pollution. We’re cleaning them up with new laws to ban bonuses for water bosses who oversee catastrophic pollution incidents, and bringing in over £100 billion of private funding to fix the broken pipes that are the primary cause of sewage leaks.”
The culture secretary, Lisa Nandy, also spoke in support of the Trust, in contrast to some of her predecessors under the Tories who had criticised a report revealing that nearly a hundred of its historic properties were built with money made in India or through the slave trade.
Nandy said she had visited Trust properties with her parents and now, with her 10-year-old son, had been to “hundreds of National Trust properties all over the country”. “What we’ve seen is an organisation that is truly national in the sense that you are rooted locally, standing with communities not just to protect and preserve, but to promote and celebrate the pride, heritage and contribution of those places and their people to our country.”
The volunteers were warmly thanked by the Trust’s chairman, René Olivieri.
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The King said the public should draw on the 'extraordinary courage and compassion' shown in response to the attacks. (Photo credit: X/@RoyalFamily)
PRIME MINISTER Keir Starmer and King Charles on Monday paid tribute to the unity shown in the aftermath of the 7 July bombings in London, as the country marked 20 years since the attacks.
On 7 July 2005, four Islamist extremists carried out suicide bombings at Aldgate Station, Edgware Road, King's Cross and Tavistock Square. The attacks killed 52 people and injured hundreds more.
Events are being held across London to commemorate the anniversary. Members of the royal family are expected to join survivors and families of the victims.
The King said the public should draw on the "extraordinary courage and compassion" shown in response to the attacks.
"We remember with profound sadness the 52 innocent people who were killed in senseless acts of evil -- and the enduring grief of their loved ones," he said in a statement published by the Press Association.
"In doing so, we should also remember the countless stories of extraordinary courage and compassion that emerged from the darkness of that day.
"The selfless bravery of our emergency services, transport workers, and fellow citizens who rushed towards danger to help strangers reminds us of the very best of humanity in the face of the very worst."
‘We stood together then, and we stand together now’
Starmer said, "Those who tried to divide us failed."
"We stood together then, and we stand together now -- against hate and for the values that define us of freedom, democracy and the rule of law."
He added, "We honour the courage shown that day -- the bravery of the emergency services, the strength of survivors, and the unity of Londoners in the face of terror."
The Duke and Duchess of Edinburgh will attend a National Service of Commemoration at St Paul’s Cathedral. A separate service will also take place at the memorial in Hyde Park for survivors and families of the victims.
Call for unity and vigilance
Charles said, "While the horrors will never be forgotten", the country "may take comfort from the way such events rally communities together".
"It is this spirit of unity that has helped London, and our nation, to heal," he said.
"Let us therefore use this 20th anniversary to reaffirm our commitment to building a society where people of all faiths and backgrounds can live together with mutual respect and understanding."
Home secretary Yvette Cooper, speaking ahead of the anniversary, said Islamist and right-wing extremism remained the most significant threats to the UK.
(With inputs from agencies)
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Navroop Singh was convicted of five charges including rape and was sentenced on July 4 at Isleworth Crown Court. (Photo credit: Metropolitan Police)
A 24-year-old man has been sentenced to life in prison for rape, attempted rape and firearm offences following a Metropolitan Police investigation in west London.
Navroop Singh, of Mellow Lane East, Hayes, was convicted of five charges including rape and was sentenced on Friday, July 4 at Isleworth Crown Court. He must serve a minimum of 14 years.
Singh was found guilty of attempting to rape a woman in Southall Park, Ealing, on October 13, 2024. He was also convicted of possession of an imitation firearm with intent to commit an indictable offence.
He had earlier pleaded guilty to three further charges: possession of an imitation firearm with intent to commit an indictable offence, rape of a girl under 13, and assault of a girl under 13 by penetration. These charges relate to the rape of a child at Hayes End Park, Hillingdon, on October 23, 2024.
Police launched an investigation following the attempted rape report in Ealing. Officers gathered evidence including CCTV footage, witness accounts and forensic material. The woman had approached two off-duty officers near the park gates, who helped her reach a police station.
Detectives linked the Ealing incident to the rape of a child ten days later. They increased patrols, distributed leaflets in the area, and traced Singh to a location near his home. He was arrested on 27 October.
Acting Chief Superintendent Sean Lynch said: “I would like to commend the strength of the victim-survivors and their families and thank them for their unwavering bravery in reporting these awful incidents to us.
“Today’s conviction is testament to the officers’ thorough investigation, which has identified a violent sexual offender and undoubtedly prevented further harm.
“We are continuing to prioritise tackling violence against women and girls with our increased specialist teams. I hope that the community will find reassurance in our action to put this predator behind bars.”
Specialist officers supported both victims during the investigation and trial.