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A scientist in a race against time to find a cure for her daughter’s rare and deadly disease has said they are “finally in the driving seat”.

Dr Michelle Teng is trying to develop the world’s first treatment for TUBB4a leukodystrophy before it is too late for her 12-year-old daughter Sofia.

The life-threatening genetic condition affects the central nervous system and can lead to an inability to walk, talk and even swallow. Most young patients die before they reach adulthood.

Sofia started showing symptoms when she was a toddler and was eventually diagnosed with the disease aged four.

“When we Googled the condition, it was a terrifying experience,” Michelle remembers.

“If you read the worst-case scenarios, the children die within 12 months.

“In [Sofia’s] case, it’s a slow, neurodegenerative disease. Obviously, I didn’t know that, and I had no idea how long she was going to live for.

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“The doctors told us there’s nothing you can do, and I think it’s probably the most devastating news for any parent to hear.”

Sofia Teng

‘It’s a ticking time bomb’

But the diagnosis spurred Dr Teng into action. At first, she raised money for research because at that point, in 2014, the disease had only just been defined.

But as Sophia’s condition began to deteriorate, to the point where she is now unable to walk or talk, Michelle realised she needed to do more.

“Anyone who’s lived with a loved one with Parkinson’s, Alzheimer’s or anything that’s degenerative will see that it’s a ticking time bomb,” she said.

“It’s a steady decline, and as the years go by, you see the people you love start losing the ability to do certain things.

“We raised something like close to £200,000 in a short space of time, which was extremely encouraging, but to really find a treatment, and to bring that treatment to clinic, will take five to 10 million, and I realised that was not going to cut the mustard.”

Sofia Teng

‘You have to be an optimist’

So in April 2021, Dr Teng set up SynaptixBio, a biotech firm based in Oxford with the sole aim of finding a treatment for TUBB4a.

The company recently signed a global licensing deal with the Children’s Hospital of Philadelphia – the world’s leading TUBB4a leukodystrophy centre – in the US to accelerate the research process.

It aims to launch clinical trials for a treatment in 2024.

Dr Teng said: “I feel like because we’ve set up this company, we’re finally in the driving seat in finding a treatment for [Sofia], within those timelines that we believe will be on time for her.

“And when you work in biotech, you have to be an optimist.”

Sofia Teng

‘A game-changer’

Research suggests there are 1,650 babies worldwide who are born with TUBB4a every year. In the UK, it is thought to affect between 60-90 newborns.

But scientists fear the number of cases could be higher still, due to many patients being misdiagnosed with other conditions, such as cerebral palsy.

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A varied combination of symptoms makes it incredibly difficult to spot. The only way to confirm the disease is by genome sequencing and an MRI scan.

Dr Dan Williams, SynaptixBio CEO and co-founder, called the treatment the company is developing a potential “game-changer”.

“One of the most horrible things is that a lot of these children don’t actually make it into late teenagers,” he said.

“Hopefully, by stopping the progression of this disease, it could offer them a better quality of life as well as an extension to their lives as well.”

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Hundreds of ‘high-value’ artefacts stolen from museum in Bristol as police issue appeal

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Hundreds of 'high-value' artefacts stolen from museum in Bristol as police issue appeal

More than 600 artefacts have been stolen from a building housing items belonging to a museum in Bristol.

The items were taken from Bristol Museum’s British Empire and Commonwealth collection on 25 September, Avon and Somerset Police said.

The force described the burglary as involving “high-value” artefacts, as they appealed for the public’s help in identifying people caught on CCTV.

It is not clear why the appeal is being issued more than two months after the burglary occurred.

The break-in took place between 1am and 2am on Thursday 25 September when a group of four unknown males gained entry to a building in the Cumberland Road area of the city.

Detectives say they hope the four people on CCTV will be able to aid them with their enquiries.

This breaking news story is being updated and more details will be published shortly.

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‘They know Britain is a soft country’: The visa overstayers living under the radar

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'They know Britain is a soft country': The visa overstayers living under the radar

Ramesh lives in fear every day. A police siren is enough to alarm him.

He’s one of up to 400,000 visa overstayers in the UK, one lawyer we spoke to believes.

It’s only an estimate because the Home Office has stopped collecting figures – which were unreliable in the first place.

Britain is being laughed at, one man told us, “because they know it’s a soft country”.

'Ramesh' came to the UK from India
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‘Ramesh’ came to the UK from India

We meet Ramesh (not his real name) at a Gurdwara, a Sikh place of worship, where he goes for food and support.

He insists he can’t return to India where he claims he was involved in political activism.

Ramesh says he came to the UK on a student visa in 2023, but it was cancelled when he failed to continue his studies after being involved in a serious accident.

He tells us he is doing cash-in-hand work for people who he knows through the community where he is living and is currently working on a house extension where he gets paid as little as £50 for nine hours labouring.

“It’s very difficult for me to live in the UK without my Indian or Pakistani community – also because there are a lot of Pakistani people who give me work in their houses for cleaning and for household things,” he adds.

‘What will become of people like us?’

Anike has lived in limbo for 12 years.

Now living in Greater Manchester, she came to the UK from Nigeria when her sister Esther was diagnosed with a brain tumour – she had a multi-entry visa but was supposed to leave after three months.

Esther had serious complications from brain surgery and says she is reliant on her sister for care.

Immigration officials are in touch with her because she has to digitally sign in every month.

Anike has had seven failed applications for leave to remain on compassionate grounds refused but is now desperate to have her status settled – afraid of the shifting public mood over migration.

“Everybody is thinking ‘what will become of people like us?'” she adds.

It’s a shambles’

The government can’t say with any degree of accuracy how many visa overstayers there are in Britain – no data has been collated for five-and-a-half years.

But piecing together multiple accounts from community leaders and lawyers the picture we’ve built is stark.

Immigration lawyer Harjap Singh Bhangal told us he believed there could be several hundred thousand visa overstayers currently in Britain.

He says: “At this time, there’s definitely in excess of about 200,000 people overstaying in the UK. It might even be closer to 300,000, it could even be 400,000.”

Asked what evidence he has for this he replies: “Every day I see at least one overstayer, any immigration lawyers like me see overstayers and that is the bulk of the work for immigration lawyers.

The Home Office doesn’t have any accurate data because we don’t have exit controls. It’s a shambles. It’s an institution where every wall in the building is cracked.”

The number of those who are overstaying visas and working cash in hand is also virtually impossible to measure.

‘They know Britain is a soft country’

“They’re laughing at us because they know Britain is a soft country, where you won’t be picked up easily,” says the local man we’ve arranged to meet as part of our investigation.

We’re in Kingsbury in northwest London – an area which people say has been transformed over the past five years as post-Brexit visa opportunities opened up for people coming from South Asia.

‘Mini-Mumbai’

The man we’re talking to lives in the community and helps with events here. He doesn’t want to be identified but raises serious questions about visa abuse.

“Since the last five years, a huge amount of people have come in this country on this visiting visa, and they come with one thing in mind – to overstay and work in cash,” he says.

“This area is easy to live in because they know they can survive. It looks like as if you are walking through mini-Mumbai.”

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‘The system is more than broken’

‘It’s taxpayers who are paying’

And he claims economic migrants are regularly arriving – who’ve paid strangers to pretend they’re a friend or relative in order to obtain a visitor visa to get to Britain.

He says: “I’ve come across so many people who have come this way into this country. It’s widespread. When I talk to these people, they literally tell me, ‘Oh, someone is coming tomorrow, day after tomorrow, someone is coming’.

“Because they’re hidden they may not be claiming benefits, but they can access emergency healthcare and their children can go to school.

“And who is paying for it? It’s the taxpayers who are paying for all this,” says the man we’ve met in north London.

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A Home Office spokesperson said: “We will not tolerate any abuse of our immigration system and anyone found to be breaking the rules will be liable to have enforcement action taken against them.

“In the first year of this government, we have returned 35,000 people with no right to be here – a 13% rise compared to the previous year.

“Arrests and raids for illegal working have soared to their highest levels since records began, up 63% and 51%.”

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The government doesn’t know how many people are overstaying their visas – here’s why

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The government doesn't know how many people are overstaying their visas - here's why

The government can’t say with accuracy how many visa overstayers there are in Britain – no data has been collated for five-and-a-half years.

Sky News has spoken to immigration lawyers about the numbers, and one believes there could be as many as 400,000 living across the country.

Harjap Singh Bhangal described the situation as a “shambles”.

The Home Office doesn’t have any accurate data because we don’t have exit controls. It’s a shambles. It’s an institution where every wall in the building is cracked,” he told Sky’s Lisa Holland.

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The visa overstayers in ‘soft’ Britain

Why doesn’t the government know?

The Home Office used to gather data on visa overstayers by effectively checking a list of passport numbers associated with visas against a list of passport numbers of people leaving the UK, taken from airlines and other international travel providers.

If there was a passport number match in the arrivals and departures part of their database, that person was recorded to have left when they should have. If there wasn’t, they were a potential overstayer.

They stopped producing the figures because a combination of Brexit and COVID added complications that made the Home Office conclude they wouldn’t be able to get to a reliable number using the same method.

It’s now four and a half years since EU citizens had freedom of movement to the UK revoked, and more than three and a half years since pandemic-era travel restrictions ended.

And yet we are still waiting to see what a new method might look like.

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The old method wasn’t perfect. If someone changed their passport while in the UK, for example, or if the airline or individual entered the number wrong when they were leaving, there wouldn’t be a match.

The Home Office regarded the statistics as likely overestimating the true number of overstayers, and the Office for National Statistics designated the figures as “experimental” rather than “official” statistics, meaning the conclusions should be treated with caution. But they were a reasonable best guess.

With all that in mind, between April 2016 and March 2020 upwards of 250,000 people were flagged as potential overstayers, equivalent to 63,000 per year.

That’s more than the 190,000 people who are recorded to have arrived in the UK on small boats since 2018.

It represents 3.5% of the seven million visas that expired over that period, so at least 96.5% of people left when they should.

Other Home Office data reveals that more than 13 million visas were issued between 2020 and the end of June 2025, including a record 3.4 million in 2023.

But what we don’t know is how many have expired, which means it’s difficult for us to even guess how many people might have overstayed.

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