‘A £5 heel prick test would have saved my son from SMA like Jesy Nelson’s twins’

As the Mirror launch our campaign to demand no more babies are left needlessly paralysed by a devastating muscle wasting disease, we speak to mum Sam Williams, whose two year old son has SMA Type 1

Mum Samantha Williams is backing The Mirror’s campaign to roll out NHS heel prick tests for SMA on the NHS “100%.” Her son Lucian Neale, now two-and-a-half, was diagnosed with SMA Type 1 – which can have a life expectancy of two years without treatment – at seven weeks old.

Soon after, Samantha, 38, and her partner Justin Neale, 39, were told to prepare for the worst and begin palliative care. Miraculously, Lucian survived and can now sit up unaided and stand with the help of leg splints. He can propel his wheelchair forwards, has a few words and is set to attend nursery school in September.

READ MORE: ‘My son’s horror condition is so rare it doesn’t have a name’

But Samantha says if Lucian had received the heel prick test at birth, the outcome would have been very different. “A heel prick test costs the NHS just £5, but would have changed everything for us and for Lucian’s quality of life,” says supermarket worker Samantha, who lives in Sofrydd, Newport, South Wales. She has an older son, Liam, 16, while Lucian’s dad, Justin, a mechanic, also has a 16-year-old son.

“I wholeheartedly back the Mirror’s campaign to roll out the heel prick test,” says Samantha. “The later SMA [classed as life limiting and not terminal ] is diagnosed in a baby or child, the more severe the symptoms.

“Days, even hours, count. The sooner a diagnosis is made, the sooner treatment can begin, which not only saves lives, but halts the muscle degeneration in its tracks. It’s incredibly hard – almost impossible – to regain.

And this is why parents are often told their child will never walk. My son would be living a normal life now if he’d been given that heel prick test. Lucian’s still fed entirely by a feeding machine. His quality of life is down to a £5 test. “

We are launching our campaign after pop star Jesy Nelson, 34, revealed that her seven-month-old twins, Ocean and Story, born in May 2025, had been diagnosed with SMA Type 1, after months of gruelling tests and may never walk.

Samantha says: “When I saw her video, it broke my heart. I’ve been there. But there is hope. We were told we’d have to say goodbye to Lucian, but now he’s two and a half and can stand on his own two feet for a few seconds – he can sit up too. There is help out there Jesy. And while you’ll need to fight for your babies every step of the way, you’re stronger than you think.”

Samantha fell pregnant with Lucian in October 2022, soon after losing another baby, Carson, at 30 weeks, and gave birth by C-section at 37 weeks, following complications including low movement and gestational diabetes. “When nurses were doing their initial checks, he went blue and was rushed down to a paediatric doctor. It happened twice, but we were reassured that Lucian was simply taking a little longer to come into the world,” she says.

Samantha was concerned that he immediately slept through the night, adding that at five weeks, his breathing became odd and he sounded chesty. “Then at five weeks and five days, he stopped moving at all or lifting his head,” she says. A Google search took her straight to SMA.

Rushing him to hospital, he was admitted to have a feeding tube inserted and his DNA was sent for genetic testing. Two weeks later, at seven weeks, a diagnosis of SMA Type 1 was confirmed. Warned by doctors that it was time to give him palliative care, Samantha continues: “He could only move his fingertips. I felt like the bottom dropped out of my world.”

Luckily, Samantha and Justin sought a second opinion. “Back at our local hospital in Cardiff, we were encouraged to try Risdiplam, an at-home oral drug that over-produces the SNM protein to make up for what is missing,” she says. Four days later, Lucian – who could still succumb if he catches a cold or RSV – showed slight signs of movement.

“There was a glimmer of hope for us. We spent 35 days in hospital, learning life support, and how to use Lucian’s feeding and suction machines, his cough assist, and medicines,” she says. “When we were in the hospital, he aspirated and almost died because he cried so much he couldn’t control his saliva.”

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Allowed home in August 2023, that October Lucian had “miracle” gene therapy. “Over the months he started to sit independently. While he hasn’t hit milestones at the right time, he has some words, he goes around in his wheelchair and is a beautiful, happy, cheeky little boy. “There’s no guarantee, but there is hope”

*The Mirror first met Lucian back in December, during our Christmas campaign for Lifelites, an assistive and sensory tech charity that helps children like him play and connect. You can donate to Lucian’s treatment fund HERE

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Strictly’s Claudia Winkleman and Tess Daly reunited after quitting the show in tears

The former Strictly Come Dancing hosts shared a joyful reunion just weeks after their final episode on the BBC show saw the pair say a tearful goodbye to the series after over two decades

Former Strictly hosts Tess Daly and Claudia Winkleman were reunited just weeks after their emotional goodbye to the series was aired. The pair quit the show together in 2025 but reunited for the launch of Tess’ new clothing range.

Tess, who has partnered with NAIA Beach to create a range of activewear, was spotted grinning from ear to ear as she hung out with her friend at the launch. In a photo posted to Claudia’s Instagram, the pair smiled at each other as Claudia held up a blue vest and matching leggings.

Claudia, who can now be seen on series four of The Traitors, captioned the post: “Brilliant @tessdaly at the launch of her amazing @naia_beach activewear collection. [Four heart emojis] it’s beautiful.”

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Alongside the blue vest and leggings set, the collection also contains a grey co-ord with an animal print. Tess commented on Claudia’s post: “Love you [two heart emojis]”

Though it was filmed before their final live episode on the show, the former hosts gave their emotional goodbye in Strictly’s Christmas special. Claudia and Tess shared a tearful hug and dance.

Tess told viewers: “Thank you again for watching us over the years, it has truly meant the world to us.” In a statement released in October, the pair said being on Strictly was an “absolute dream”.

“We have loved working as a duo and hosting Strictly has been an absolute dream. We were always going to leave together and now feels like the right time,” they said.

“We will have the greatest rest of this amazing series and we just want to say an enormous thank you to the BBC and to every single person who works on the show. They’re the most brilliant team and we’ll miss them every day.

“We will cry when we say the last ‘keep dancing’ but we will continue to say it to each other. Just possibly in tracksuit bottoms at home while holding some pizza.”

True to their word, there were plenty of tears when they filmed their final episode on 20 December. There were several emotional tributes to the hosting duo, including one from Queen Camilla.

Read out by Craig Revel Horwood, it said: “Tess and Claudia, as you prepare to take your final twirl, I just want to say thank you on behalf of the millions who watch you each week. I have often thought that Strictly is not so much a show about dancing as about friendships, the bonds forged, the struggles overcome, and the joy shared in undertaking a joint endeavour.

“If that is true, then perhaps yours has been the greatest strictly partnership of all. The warmth, compassion, and sheer happiness you have radiated with and from each other has been at the heart of the show’s success.

“I think I speak for everyone when I say you have been utterly fabulous. I wish you both every success in wherever life’s journey takes you next, but as one who has appreciated its lifelong benefits, do promise us one thing, keep dancing. With the warmest gratitude and admiration, Her Royal Highness, Queen Camilla.”

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Strictly Come Dancing star rushed to hospital after being run over

A finalist of the BBC dance show Strictly Come Dancing was rushed to hospital after being run over by a car in an accident that ‘could have been fatal’ if it weren’t for one thing

A Strictly Come Dancing finalist was rushed to hospital after being in a car accident that ‘could have been fatal’. John Waite, a Great British Bake Off winner who reached the final of the dance show in 2021, shared via Instagram the one thing that meant the accident wasn’t worse.

He revealed on Wednesday (7 January) that. he was run over by a car the night before. He wrote: “Last night I got run over (seriously). I rolled up the bonnet damaging it and the windscreen, before splatting onto the road and crawling to the pavement where some angel of a human threw his coat around me and waited with me for an ambulance.”

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John added that the doctors told him that the accident “could have been fatal” if he wasn’t so muscled. “The doctors said ‘thank god you’re 16 stone of muscle because it could have been fatal’.

“Moral of the story – build strong muscle and core strength, and don’t wear black while crossing the road in the dark when an idiot comes speeding without looking…”

The baker also assured fans that he was alright. “I’ve been scanned and poked and prodded and I’m ok,” he wrote. “Still gay though.” He returned to Instagram later that day to clarify that he meant “speeding” in a figurative sense.

“For the avoidance of doubt, in my last post I said ‘speeding’. I used the term figuratively rather than literally,” John said. “I meant: it was sudden and shocking.

He added: “I don’t know what speed the driver was going. But it was enough to skittle me up onto his windscreen and down onto the floor.”

John made history when he competed on the 19th series of Strictly Come Dancing. When he was partnered with fan favourite pro Johannes Radebe, they became the show’s first male same-sex couple. Together, they came second on the show, losing out to Rose Ayling-Ellis and Giovanni Pernice.

His stint on Strictly came nine years after he shot to fame on the Great British Bake Off. In 2012, John competed on the third series of the show and eventually won the show, despite suffering a major injury to his finger during the sixth episode.

Away from TV, John continues to bake and lives in Leeds with his husband Paul Atkins. The pair got engaged in 2017 but only tied the knot seven years later in a ceremony in New York.

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Speaking to Gay Times, John said his relationship with his husband is what he’s most proud of. “The thing that I’m most proud of in my life, without a shadow of a doubt, is the fact that my husband and I have been through 18 years of togetherness.”

Warning signs of rare genetic disease after Jesy Nelson’s twins’ devastating diagnosis

Warning signs of rare genetic disease after Jesy Nelson’s twins’ devastating diagnosis – The Mirror

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Need to know

Pop singer Jesy Nelson revealed her newborn twins have been diagnosed with a life-changing disease that will mean they may never walk or regain their neck strength again

Jesy Nelson’s twins have been diagnosed with a rare genetic disorder(Image: INSTAGRAM)

Everything you need to know

  1. Jesy Nelson’s twins – Ocean Jade Nelson-Foster and Story Monroe Nelson-Foster – have been diagnosed with spinal muscular atrophy type 1 (SMA1). The disease is a rare and severe genetic condition that affects muscle strength and movement, meaning some children will fail to walk and talk as they get older.
  2. Possible early warning signs include: floppiness, difficulty holding their head up, weak or reduced movement, shallow breathing, trouble feeding or swallowing and a weak cry.
  3. Medical professionals stress that early diagnosis can be life-changing. In recent years, new treatments have transformed outcomes for some children with SMA, particularly when started as early as possible.
  4. The 34-year-old singer and her musician fiancé Zion Foster, 27, welcomed daughters Ocean Jade and Story Monroe Nelson-Foster in May after a difficult pregnancy.
  5. The former girl band star first went to her GP after her mum noticed the twins were not moving as much as they should be. After the twins were struggling to feed, Jesy pushed for her answers and her daughters were diagnosed with SMA Type 1.
  6. Jesy has been told her twins may never walk or regain their neck strength. There is currently no cure for SMA, but there are treatments and support available to help people have the best possible quality of life.

READ THE FULL STORY: Early sign parents should watch out after Jesy Nelson reveals twins devastating diagnosis

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Martin Roberts urges homeowners to do this one thing now to save homes from damage during cold snap

As temperatures continue to plummet, the TV presenter and property expert says UK households should to check their properties. And, he says, there are lots of clever ways to protect them from damp and mould…

New research commissioned by Health Equals has suggested that an estimated 6 million families in the UK are living with issues like damp, cold, and mould in their homes – alarmingly, 3 million of them are children. TV presenter and property expert Martin Roberts urges that this should be seen as public health crisis.

He says: “We often don’t realise the significance of our home environment in relation to how it affects our health. But the environment in which you live, not only affects your mental wellbeing, but also has now been proven beyond doubt to affect and potentially very seriously affect your health and the health of your family, and kids especially.”

Damp and mould in homes pose significant health risks, primarily affecting the respiratory system, causing coughs, wheezing, shortness of breath, and worsening asthma, but also leading to skin rashes, eye irritation, and allergic reactions. Mould produces allergens, irritants, and sometimes toxins, impacting vulnerable groups like children, the elderly, and those with existing conditions, potentially causing serious illness, infection, and even affecting mental wellbeing.

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“It’s got to be recognised as a public health crisis, the amount of damage it’s doing to people, but also the knock on effects it is having on the National Health Service,” says Martin. “But there are ways to protect your property – be it rented or owned.” Here’s how…

Landlords need to act

“People who are providing housing need to act quickly to make sure that they know problems are resolved,” says Martin. “I think often if you’re a renter you are slightly nervous about kicking up a fuss. The demand for rental properties is huge, people don’t want to rock any boats. But speaking as a landlord myself, I’d want to know if if there were issues in my property that I maybe wasn’t aware of because if I deal with them, not only am I doing something to help my tenant and help their health, but also, I’m probably preserving the lifetime of my property.”

Monitor your home

“Monitor the status of your home to try and avoid the various types of of damp which cause various types of mould. That’s either caused by water coming in from cracks in the fabric of the building, or rainwater gutters that aren’t working, or soil beds that are built pushed up outside the outside of the house,” says Martin.

“Condensation caused by people breathing is an issue too. As human beings we breathe out water in our breath, and also create moisture when cooking and using the tumble dryer, or when having a bath or shower. We’ve got to recognise we need to get circulated air flowing. Often, modern houses can seem like they’re a bit hermetically sealed so there’s no natural airflow. People need to strike a balance between keeping the house warm and getting fresh air into that house.”

What to look out for

“Thankfully the issues are usually very visible. Damp and mould shows itself in, literally, mould on the walls,” says Martin. “Around the windows, in the back of cupboards, generally lower down on walls. And that’s usually black. It can look more like a fungus, often it’s just a sort of black staining. Then when it comes to damp, you can tell using all your senses. Feel the walls, does it feel damp? Does it feel cold? Does it feel wet? Damp tends to smell musty, like an old pair of socks.”

Locate the problem

“Look for telltale signs of water coming in,” says Martin. “It’s normally around on the exterior walls of a property or on a chimney breast. Go outside when it’s raining with your umbrella and look at the gutters. Is something overflowing? Is water flowing freely down the drain pipes? Is the drain itself full of leaves? Is water able to get away quickly? ‘Cause that’s what you want.

“Is there a flower bed that’s gradually crept up the side of the wall outside over time that could be causing a damp patch inside. Properties aren’t rocket science, you know. Normally there’s a cause and effect. Normally you can say, ‘well actually I’ve got a bit of damp there, what’s on the other side of that?’ ‘Oh look, there’s a drain pipe that’s got a crack in it’.”

Add some air flow

“A more modern issue is condensation,” says Martin. “We strive to make our homes more energy efficient. We cut down on drafts, we’ve got double glazing and the doors fit well. I mean old houses used to have badly fitting doors, badly fitting windows, you know, and air would flow through them and damp you know generally wasn’t from condensation, generally wasn’t an issue. So this this in this day and age when we seal our homes, it it doesn’t stop us as human beings creating moisture, you know. So just try and do what you can. And if you’re cooking in the kitchen, open the window while you’re cooking.”

Check your tumble dryer

“If you’ve got a tumble dryer, they have those kind of flexible tubes at the back and sometimes – because the tumble dryer often sits on the top of a washing machine which is vibrating – these move, so all the the damp air from your dryer is is is is spilling out into the house.”

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Clean out gutters

“It’s a classic time for all the gutters to get to get clogged with leaves and other stuff. So either do it yourself or if the gutters are high up, get somebody in just to clean out your gutters for you. Make sure the water is flowing away.”

*Lives are being cut short by up to 16 years in parts of the UK. Damp, cold and mould in our homes is part of the problem. To be part of the solution, see HERE. Let’s #MakeHealthEqual.

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BBC radio star dies as tributes paid to ‘wonderful warm-spirited’ broadcaster

The presenter started working working at the BBC radio station in 1967 was described by former colleagues as ‘one of the best people in broadcasting’ following her death

A BBC radio pioneer has died and tributes have flooded in from her former colleagues and friends. Liverpool-born Jenny Collins, who has died aged 83, was one of the founding members of the Merseyside radio service, which was set up in 1967 and was only the third local BBC radio station.

She began her lengthy career as a reporter and on-air presenter, taking calls from listeners and hosting Junior Spin, before moving into senior editorial roles such as programme controller, according to the BBC. Following her death, which was announced on January 2, her former colleague Roy Corlett said she had helped “build something that is still here, still going strong nearly 60 years on”.

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Another former colleague and former Radio Merseyside presenter, Roger Lyon, published a moving tribute on Facebook, describing her as “a genuinely lovely person” with “a great broadcasting voice”.

“Very sad to hear today of the passing of one of the founding members of Radio Merseyside, the lovely Jenny Collins,” he wrote. “She was there at the start in 1967 and performed many duties both in front of and behind the mike.

“I still have letters that we swapped in the mid 90s when I was living and working in Oz, and she was acting Programme Controller, planning what shows I could do on RM when I returned.

“The last time I saw her was about 4 years ago when she was my guest on RM chatting about her career working there. She was married to Steve Voce who for many years presented a jazz programme called Jazz Panorama. She had a great broadcasting voice and was a genuinely lovely person. R I P.”

His heartfelt post was quickly flooded with similar sentiments, including one who described her as “one of the best people I ever met in broadcasting”. The former head of BBC Radio Merseyside, Mick Ord, also commented: “RIP Jenny. A wonderful, warm-spirited woman who played an integral role at Radio Merseyside for many years.”

Jenny’s late husband Steve Voce, who died in November 2023, was also a member of the BBC Radio Merseyside alumni, and worked at BBC Radio 2 and as a music reviewer. His obituary in the Jazz Journal referenced his “lively, witty and often acerbic style” of reviews, which were “much appreciated by many JJ readers”.

Editor Mark Gilbert wrote: “When I asked him for a biography for our contributors page, I got simply ‘In the first half of his life Steve Voce was preoccupied with listening to jazz, boozing and adultery. In the second half of his life he gave up adultery.’ There was a lot more to the life and work for jazz than that. It probably isn’t excessive to suggest he lived for the music.”

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