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‘We’d never heard of it’: a woman tells of daughter’s death from mitochondrial disease

about 23 hours ago
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When I had my 20-week scan, Lily had a strange heartbeat.It would beat and then stop and then start beating again.The sonographer had never seen it before.I was referred by my local hospital to St George’s to see a specialist and it happened again.I went back every day for a week, and then every other day for another week, but they never saw it again.

I had another scan nearer Lily’s due date and that time there was no blood flow between the placenta and the baby.I had to have an emergency caesarean.That was at 35 weeks.She was so tiny, 3lb 8oz, but they couldn’t find anything wrong with her.After four or five weeks I was allowed to bring her home.

She wasn’t putting on weight.One day, when she was about seven weeks old, I was out with the kids for the day, and when I took her out of the pushchair she had stopped breathing, she was grey and foaming around the mouth.We got her to a hospital and she started breathing again.She was discharged, but a friend of mine who’s a paediatric nurse advised me to take her to East Surrey hospital, where she was born and they had all her notes.We were there for 10 days while they did more tests.

The doctors thought she might have a metabolic disease and blue-lighted us to the Royal Brompton to see a specialist,They agreed, but we were allowed home,We had to get a taxi back and on the way Lily stopped breathing again,I had a nurse with me who performed CPR,Lily had two cardiac arrests a couple of nights later at East Surrey and ended up at Evelina children’s hospital on life support.

Lily had a lumbar puncture and some more tests.They strongly suspected she had mitochondrial disease.We were told: “I’m really sorry, there’s no treatment, there’s nothing we can do, Lily’s going to die.” We had a muscle biopsy to confirm the diagnosis but they didn’t think the result would come back before she died.Lily didn’t die when they turned off life support.

We took her home and she survived for six months.I used to sit up in bed with her on my tummy because I was so frightened of waking up and her not being here.I couldn’t bear the thought of her being on her own.We had never heard of mitochondrial disease.After Lily died, we asked for donations instead of flowers at her funeral and there was nowhere to send them.

There was no active charity dedicated to mitochondrial diseases.We thought, it’s never going to change unless we do something.We just did it, we set up The Lily Foundation.We knew that in order to treat it or to find a cure, we had to be able to diagnose it properly.So we raised money for a gene-testing programme.

That was a hugely successful project and it’s now a routine test for mitochondrial disease.The charity has now raised more than £11m and supports more than 1,300 families and patients across the UK.Our website is full of information and we run annual meet-ups for families, for adults and for young adults.We have closed Facebook groups that bring people together.People go on there for practical advice and support as well.

For parents to have an opportunity to have a baby free of these diseases that’s genetically theirs, what they have done in Newcastle is not only an incredible piece of science to be celebrated, but an amazing step forward for families.It is such a tightly regulated, robust process from beginning to end, and that’s something we should be extremely proud of.There will always be learning.It’s a new technique and I hope it opens doors for more in the future.This is about giving families a choice when every other option has been ruled out.

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Internet-safe iPhone for children goes on sale for £99 a month

A neutered iPhone, stripped of web browsers and social media apps, is going on sale to parents worried about their children’s phone use, but the “peace and freedom” its creators promise will come at a steep price.The pared-back version of the top-selling handset, which will not allow internet searches, gaming or downloads of Instagram, TikTok, Snapchat and other social media, is being offered in the UK for £99 a month by a US company that wants children to “reconnect with real life, not just reduce screen time”.At more than double the price of a typical two-year iPhone contract, Sage Mobile, an iPhone 16 handset loaded with custom software, will be a pricey way to avoid online harms. But it reflects growing parental dilemmas over the best way to start their children’s digital lives.Research has shown children with problematic smartphone use are twice as likely to experience anxiety and almost three times as likely to experience depression compared with those whose use did not resemble addiction

1 day ago
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WeTransfer says user content will not be used to train AI after backlash

The popular filesharing service WeTransfer has said user content will not be used to train artificial intelligence after a change in its service terms had triggered a public backlash.The company, which is regularly used by creative professionals to transfer their work online, had suggested in new terms that uploaded files could be used to “improve machine learning models”.The clause had previously said the service had a right to “reproduce, modify, distribute and publicly display” content, and the updated version caused confusion among users.A WeTransfer spokesperson said user content had never been used, even internally, to test or develop AI models and that “no specific kind of AI” was being considered for use by the Dutch company.The firm said: “There’s no change in how WeTransfer handles your content in practice

1 day ago
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Apple inks $500m deal for rare earth magnets with US mining firm

Apple has signed a $500m deal with a US firm for rare earth magnets, essential for manufacturing electronics, after China curbed exports of the scarce, vital materials.The backing from one of the world’s most valuable companies comes after MP Materials, which operates the only US rare earths mine, last week agreed to a multibillion-dollar deal with the US Department of Defense that will see the Pentagon become its largest shareholder. Both deals are aimed at mitigating supply chain risks after China limited the outgoing supply of rare earths earlier this year in response to Donald Trump’s sweeping tariffs.The deal, announced on Tuesday, guarantees Apple a steady flow of rare earth magnets free from China – by far the world’s largest producer. For Apple, the cost to support US magnet production pales in comparison to the long-term risk that it could lose access entirely to the critical components, analysts said

1 day ago
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Nothing Phone 3 review: a quirky, slick Android alternative

The Phone 3 is London-based Nothing’s latest attempt to get people to ditch Samsung or Apple phones for something a bit different, a little quirky and more fun.The Guardian’s journalism is independent. We will earn a commission if you buy something through an affiliate link. Learn more.As the firm’s first high-end Android in several years, it has most of what you’d expect a flagship phone to have

1 day ago
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Elon Musk’s Grok chatbot melts down – and then wins a military contract

Hello, and welcome to TechScape. This week, Elon Musk’s X, formerly Twitter, saw its artificial intelligence chatbot Grok go Nazi. Then its CEO resigned. In the past three years of Musk’s ownership of the social network, it feels like X has weathered at least one public crisis per week, more often multiple.Last week, Musk’s artificial intelligence firm, xAI, saw its flagship chatbot Grok declare itself a super-Nazi, referring to itself as “MechaHitler”

2 days ago
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AI chatbot ‘MechaHitler’ could be making content considered violent extremism, expert witness tells X v eSafety case

The chatbot embedded in Elon Musk’s X that referred to itself as “MechaHitler” and made antisemitic comments last week could be considered terrorism or violent extremism content, an Australian tribunal has heard.But an expert witness for X has argued a large language model cannot be ascribed intent, only the user.xAI, Musk’s artificial intelligence firm, last week apologised for the comments made by its Grok chatbot over a 16-hour period, which it attributed to “deprecated code” that made Grok susceptible to existing X user posts, “including when such posts contained extremist views”.Sign up for Guardian Australia’s breaking news emailThe outburst came into focus at an administrative review tribunal hearing on Tuesday where X is challenging a notice issued by the eSafety commissioner, Julie Inman Grant, in March last year asking the platform to explain how it is taking action against terrorism and violent extremism (TVE) material.X’s expert witness, RMIT economics professor Chris Berg, provided evidence to the case that it was an error to assume a large language model can produce such content, because it is the intent of the user prompting the large language model that is critical in defining what can be considered terrorism and violent extremism content

3 days ago
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Southern Water nearly doubles CEO pay to £1.4m despite bonus ban

about 6 hours ago
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Jaguar Land Rover to axe 500 UK management jobs as Trump tariffs fallout dents sales

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AI firms ‘unprepared’ for dangers of building human-level systems, report warns

about 13 hours ago
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Zuckerberg says Meta will build data center the size of Manhattan in latest AI push

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Twelve-year-old Chinese swimmer Yu Zidi qualifies for world championships

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Welsh wipeout in Lions squad for first time since 1896 reflects sorry decline

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