The mother of a boy with a rare genetic disorder, known to affect around 200 people worldwide, has said doctors told her “nothing can be done” and he is “unlikely to survive past his teens”.
Amy Sheridan-Hill, 46, a former teacher living in Ware, Hertfordshire, said she was “shocked” for her son Frankie to be diagnosed with H-ABC, a rare genetic disorder which affects certain parts of the brain, in 2021, aged five.
Frankie, now 10, was born in 2015 after Amy said she had a normal pregnancy and planned C-section, noting “no issues from birth”.
As Frankie was her first child, Amy said she was “quite unaware of the proper development stages”, so when her son could not sit up like other children she saw around her, she initially thought it was “nothing to worry about”.
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But by the age of two, Amy said Frankie was not walking independently, which most toddlers learn to do by 18 months, so she took him to a doctor who made a referral to a physiotherapist.
This is when Amy said she was told her son might have hypermobility, a condition of very flexible joints, but when Frankie still was not walking by four, a physiotherapist noticed “a certain way his foot went that made her think of cerebral palsy”, so he was referred to a neurologist.
Amy, her husband, Greg, and her sons, Frankie and Rory (Rachael Griffin-Kett Photography/PA Real Life)
Amy said Frankie had an MRI and then genetic testing to get his diagnosis of H-ABC – a very rare form of leukodystrophy, which is a group of genetic disorders that affect the white matter of the brain – at five years old, which came as a “massive shock” and turned their world “upside down completely”.
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According to H-ABC Foundation UK, as of 2019, fewer than 200 documented cases of H-ABC have been identified, the majority of which are children, but that number is on the rise as patients have access to better clinical diagnoses.
“When you go to a doctor, you expect to be told what can be done,” Amy told PA Real Life.
“So I think to be told ‘nothing can be done’ is quite a shock.
“You’re told they’re going to die essentially. I think there’s still some PTSD from the diagnosis and I think a lot of parents say that it’s quite big to be given this information and sent on your way.
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“When you google leukodystrophy, it just gives you the worst-case scenario. With some types of leukodystrophy, kids die within two years, so it is not a word you want to google if you’ve just been given that diagnosis.”
By this stage, Amy said he was behind his peers developmentally, especially with his walking ability, but also his speech and reading level.
Frankie loves playing with his ‘protective’ younger brother Rory (Rachael Griffin-Kett Photography/PA Real Life)
In the aftermath of Frankie’s diagnosis, Amy said she was “googling everything” and came across a Facebook group for H-ABC that had “less than 100 worldwide members”, so she joined it.
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Shortly after, Michelle Teng, a fellow mum from the group based in Oxford, got in touch and told Amy about another Cotswolds-based mum named Ali Candy-Waters, so they all jumped on a Zoom call together and eventually decided to set up a charity called H-ABC Foundation UK to raise awareness for the condition.
“I think having mums who are going through what you’re going through is just really helpful,” Amy said.
“We don’t see each other that often, but we text constantly.
“I was talking to Ali this morning about the mum guilt of when you don’t put your child in his stander every day – because he should and it’s good for him – but actually getting him in the stander is really difficult.
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“We’ve all got brilliant friends and families, but people that are going through it, they know (what it’s like) when you’re having a meltdown, so you can phone one of them.”
Through fundraising initiatives such as marathons and school bake sales, Amy said the charity has helped fund research into the disease and supported in buying other families affected by the condition wheelchairs or iPads, which can help children without speech to communicate.
Alongside this, Michelle is the co-founder of an Oxford-based company called SynaptixBio, which has recently chosen its candidate drug to take forward into clinical trials to treat H-ABC.
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Frankie was diagnosed with H-ABC at five years old (Collect/PA Real Life)
Amy said the timeline for these trials could be within the next year or two and it would not completely cure Frankie, but it could potentially “hold the disease to stop children losing any more skills”.
Currently, there is no known cure for the condition, but treatments such as physical therapy and certain medication may alleviate symptoms and improve quality of life.
In the meantime, Amy said her family’s goal is to keep Frankie “as strong as possible” so that there is a “better starting point” if he is selected for the trial.
To do this, Amy said Frankie regularly has physio and occupational therapy and Botox to relax the muscles in his legs.
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He uses leg splints, Lycra shorts, a stander and a walker, and will need to have X-rays and surgeries in the future because his spine will start curving.
If Frankie is not eligible for the trial, Amy said it might be a few more years before he can get access to what could be a drug that completely changes her son’s life.
For now, Amy said Frankie loves playing with his “protective” and “kind” younger brother Rory, eight, and he “loves” being in a mainstream school, where she commended his “amazing teachers” and the whole class who “just really look after him”.
“It’s really sweet to see,” Amy said.
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“When they do assemblies, they make Frankie the centre of things and they always make sure he’s really involved in everything.
“They specialise the curriculum for him because he is delayed, so he’ll do his own work, but he just loves being part of the class.”
She added: “Frankie is a very happy child. He can read, he loves to play PlayStation, and he can use his iPad.
“If we could keep the disease static and he doesn’t decline, he’d have a great life.
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“If we could get some form of treatment in the next two or three years, I think Frankie’s path would be quite different.
“We hope that other families don’t go through what we’ve been through.”
Ultimately, Amy said she wants to raise awareness of the disease because “there’s probably more cases out there”.
She said people need to know that there are charities like H-ABC Foundation UK “that have been set up to support families and there are doctors and scientists working on treatments”.
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Amy said: “Now we can tell them where we are and that gives them hope, whereas when Frankie was diagnosed, there wasn’t that hope. So we’ve had to create that hope and now we can share it with other families.”
To find out more about H-ABC Foundation UK, visit its website: www.h-abcfoundation.org.
In a written statement to MPs, she said the proposed 360km per hour speed was faster than any high-speed train in service in the world, and meant safety tests would need to wait until the new railway line between London and Birmingham was finished, or that trains would need to be sent abroad for testing.
The five barns would become 10 new properties under the proposals
Barns which belonged to the notorious Norfolk farmer, Tony Martin, could be turned into new homes. The barns are part of the farm at Bleak House near Emneth in Norfolk. Bleak House became well-known following the shooting of two burglars in 1999 which ignited a national debate on householders’ rights.
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Martin was sentenced to life for murder after fatally shooting 16-year-old Fred Barras in August 1999. Barras had broken into the semi-derelict site alongside his accomplice, Brendon Fearon, 29. They’d travelled from Newark, Nottinghamshire to raind the property where Martin stored antiques.
When Martin heard them, he opened fire from an upstairs bedroom with a pump-action shotgun. Both burglars were shot, with Barras dying at the scene. Fearon was treated in hospital.
His charge was later downgraded to manslaughter on the grounds of diminished responsibility. After serving time, he returned to his Norfolk farm, in 2003.
Plans have been submitted by Jacqueline and David Wadsley, who Martin left his estate worth over £2.5 million to following his death, aged 80, last year. The five barns would become 10 new properties under the proposals.
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Martin and Mrs Wadsley first met more than two decades ago when she was the landlady at the Hare & Hounds, the village pub he frequented after his release from prison.
In a planning statement issued to the Borough Council of King’s Lynn and West Norfolk, the couple say they hope to convert five barns, described as “functional agricultural buildings and modest in appearance”, into homes.
The planning statement by the Wadsleys’ agent says: “The site comprises a group of detached agricultural barns located within a rural farmstead setting. The barns are arranged in clusters across the site and are set within areas of hardstanding and grassland, surrounded by mature trees and open fields.
“Two of the barns are steel-framed structures, whilst the remaining three are of traditional brick construction with roofs finished in metal sheet cladding. The structures are characteristic of functional agricultural buildings and are modest in appearance.”
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The couple are asking the council for consent under permitted development rights which allow agricultural buildings to be turned into homes without full planning permission.
For millions, State Pension Age increases mean retirement is no longer a distant dream, it’s a looming source of stress, and too many are approaching the finish line without a clear plan.
32% of UK workers say they aren’t confident they’ll retire with a comfortable income
Confidence drops sharply with age: 48% of 45-54-year-olds and 40% of those 55+ feel unprepared
Nearly 1 in 5 (17%) approaching retirement have no financial goals
19% of workers have never logged in to check their pension value
Only 27% check their pensions at least once a year
“Too many people are approaching retirement without knowing where they stand or whether their current savings will support the lifestyle they want,” he says.
Women are disproportionately affected
42% of women lack confidence in their retirement income
Just 27% of men express similar concerns
Women are less likely to have formal financial goals or plans in place
Small changes can make a big difference
Experts stress that retirement planning doesn’t need to be overwhelming. Simple actions today can have a major impact over the long term:
Check your pension balance regularly using projection tools
Increase contributions after a pay rise
Take full advantage of employer-matched contributions — it’s free money
Explore the support tools your scheme provides, from guidance to transfer tools
“Employers and pension providers also need to make it easier for workers to understand and use these tools,” Futcher adds.
“Improving retirement outcomes is a shared effort — small steps now pay off big later.”
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Recommended reading:
3 easy steps to check your pension today
1. Log in now Don’t wait another day – 1 in 5 UK workers have never logged in to see their pension balance. Checking your account helps you understand exactly where you stand.
2. Set clear goals Even a simple target – like how much income you want at retirement — makes a huge difference. Nearly 1 in 5 nearing retirement have no goals, so start planning early.
3. Maximise contributions If your employer offers matched contributions, don’t leave free money on the table. Small increases, even after a pay rise, compound into a significantly bigger pot over time.
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Use your pension’s online projection tools to see how small changes today could change your retirement picture.
President Donald Trump backs down from his midnight deadline for an onslaught on Iran’s energy plants as he says a peace deal is coming – prompting Tehran to brand the claims “fake news”
US President Donald Trump has backed down from his threat to blitz Iran’s energy plants and infrastructure if it failed to open the Strait of Hormuz by midnight Monday.
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Trump claimed the US and Tehran had held talks aiming for a “complete and total resolution of our hostilities” in the Middle East – prompting Tehran to brand the claims “fake news.”
The disagreement on Trump’s claims came as 5,000 Marines steam towards the Gulf for what many believe will be a ground operation on Iranian soil prompting escalation fears. Half of the troops are sailing from San Diego and the rest are on board the amphibious assault carrier USS Tripoli, which is steaming from its duties off the coast of Japan.
Trump said on social media: “The US and Iran have had over two days very good and productive conversations regarding a complete and total resolution of our hostilities. He said he had “instructed the department of war to postpone any and all military strikes against Iranian power plants and energy infrastructure for a five day period.”
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And he added later: “We want to see no nuclear bomb, no nuclear weapon. Not even close to it,” and claimed the US would try to retrieve Iran’s enriched uranium. He even claimed his envoys were talking to Iran “today,” prompting Iran to deny they were talking to the US with the Tehran’s Foreign Ministry saying in a statement:
“We deny what US President Donald Trump said regarding negotiations taking place between the United States of America and the Islamic Republic of Iran. The Islamic Republic of Iran adheres to its position rejecting any type of negotiations before achieving Iran’s goals from the war.”
Iran’s denial negotiations were taking place was underlined when Tehran’s parliament speaker Mohammad Bagher Qalibaf also said it was not true. He even said Trump’s claims were “fake news is used to manipulate the financial and oil markets.” And British Prime Minister Keir Starmer also cast doubt on the war ending soon.
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He welcomed claims that talks between the US-Iran had taken place, but said it would be “false comfort” to assume the war will have “a quick and early end” The U.K.’s air defence Type 45 destroyer HMS Dragon has docked at Greece’s Souda Bay naval base, en route to help defend British military bases in Cyprus.
It departed the U.K. on March 3, days after an apparent Iranian drone launched from Lebanon struck the RAF Akrotiri air base, causing minor damage to an aircraft hangar. The regional death toll has risen to more than 1,500 people in Iran, more than 1,000 in Lebanon, 15 in Israel and 13 U.S. military members.
The Lebanese Health Ministry said on Monday that 10 people had been killed over the past 24 hours. Civilians have also been killed on land and sea in the Gulf region. And millions of people in Lebanon and Iran have been displaced. Oil prices have climbed to more than $100 a barrel and U.S. gasoline prices surged to nearly $4 a gallon.
Trump added: “All I’m saying is, we are in the throes of a real possibility of making a deal.” “And I think, if I were a betting man I’d bet for it. But again, I’m not guaranteeing anything,” he said. Speaking to reporters on Monday, Trump said the U.S. would retrieve Iran’s enriched uranium as part of a potential agreement with the Islamic Republic.
“It’s very easy, if we have a deal with them, we’re going down and we’ll take it ourselves,” Trump said as he departed from a weekend in Florida. Trump said any deal with Iran would include ending the country’s nuclear capabilities.
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Trump told reporters Monday his Middle East special envoy Steve Witkoff and Trump’s son-in-law Jared Kushner conducted talks Sunday into the evening. He said talks would continue today but he added the U.S. has not talked to Supreme Leader Ayatollah Mojtaba Khamenei.
Hezbollah and Israeli forces have fought at multiple points along the border since Israel launched a renewed ground incursion into southern Lebanon.
The popular series, which started in 2024, has been called ‘comedy gold’ by viewers
A BBC series hailed as “cracking” and “comedy gold” is reportedly set to return for a third run.
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Mammoth, following a 1970s PE teacher given a fresh shot at life, launched in 2024 and proved an instant hit with viewers. According to The Sun, production on the third series is scheduled to commence in June.
Starring Mike Bubbins as Tony Mammoth and Car Share actor Sian Gibson as his daughter, the programme – which was produced and shot in Cardiff – followed the teacher when his body was found preserved in ice. He had previously been presumed dead in an avalanche during a school trip in 1979.
Following his revival, he has to navigate a world that has totally changed, reports the Mirror.
A BBC synopsis previously explained: “In the Seventies he was a carefree Cardiff bachelor, teaching PE and generally living la vida loca. In 2024, he thought the world would still be his oyster, but Mammoth never really liked oysters, he was more of a pint and a packet of crisps sort of bloke. All he wanted was his old life back; the same job, the same clothes, the same car and the same soundtrack.”
Mammoth debuted in 2024, with its second series airing last year.
Audiences embraced the show, with one viewer posting on Imdb.com that it was “a cracking comedy” that “feels remarkably relevant”, stating: “It is inoffensive yet sharp, poking fun at 1970s attitudes whilst highlighting the absurdities of modern life.”
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“There were many genuine laugh out loud moments and some wonderful hilarious situations created by the writers,” one person commented.
Another viewer observed: “Bubbins is wonderfully understated as the titular star and delivers the punch lines with little fanfare but lots of laughs. The supporting cast is brilliant, but this is very much Bubbins show and plays it to perfection.”
“Love it, a much needed slice of comedy gold and well done to the BBC for backing it,” remarked another viewer.
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“The writing is so strong, when you sit down you just know you’re in for some happy, silly, uncomplicated good fun and it’s been great to watch the series develop.”
The £60 ticket offers seven consecutive days of unlimited travel for up to two adults and four children, helping families make the most of the holidays while keeping costs down.
ScotRail is giving Lanarkshire families the chance to enjoy unlimited rail travel across Scotland this Easter with the return of its popular Family Pass.
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The £60 ticket offers seven consecutive days of unlimited travel for up to two adults and four children, helping families make the most of the holidays while keeping costs down.
For the first time, the Family Pass is available to purchase online, making planning and booking even easier.
Seven days of consecutive travel can start on any day between Thursday, April 3, and Sunday, April 13, giving families the flexibility to make the most of the Easter holidays.
The Family Pass provides excellent value-for-money and convenience compared to travelling by car, helping families avoid fuel costs, parking charges, and busy roads.
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Customers can relax together on the journey, enjoy Scotland’s stunning scenery, and arrive directly in the heart of cities, towns, and popular tourist destinations.
Whether it’s exploring country parks, visiting free attractions or heading for a seaside day out, ScotRail’s Family Pass is designed to help families enjoy a memorable Easter without stretching their budgets.
Claire Dickie, ScotRail Commercial Director, said: “We’re pleased to bring back our popular Family Pass to help families make the most of the Easter holidays.
“With this limited time offer, families can enjoy unlimited travel for seven consecutive days, making it easier to explore Scotland together without worrying about the cost.
“With the option to buy online, it’s now even more convenient for customers to plan their Easter adventures by rail.”
*Don’t miss the latest headlines from around Lanarkshire. Sign up to our newsletters here.
And did you know Lanarkshire Live had its own app? Download yours for free here.
Newsboy fancies his nap, Peckforton Hills, to score a first hurdle win at Southwell (3.30) and he also rates Dr Ali at Wolverhampton in the 7.00
PECKFORTON HILLS can step up to the task to score his first win over hurdles in the Free Bets On attheraces.com Conditional Jockeys’ Handicap Hurdle (3.30) at Southwell.
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A Carlisle bumper winner last February the six-year-old ran well on his second run over the smaller obstacles, when he finished third on his handicap debut at Sedgefield last month.
He improved further on his most recent run 27 days go at Doncaster over an extended 2m3f, when he ran on to finished second having been hampered two out.
Co-trainers Oliver Greenall and Josh Guerriero now move my selection up to three miles for the first time, which would appear the correct course to take.
In the Midnite, Building The Future Of Betting Classified Stakes (Div II) over six furlongs at Wolverhampton, DR ALI (7.00) who took 18 attempts to score a first win gets the vote.
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The son of Invisible Army got up in the final strides to beat Magna a neck at Kempton in January and following a lack-lustre effort at Southwell last month, the four-year-old bounced back to form with a battling silver medal over course and distance two weeks ago.
A similar performance from a favourable draw would give John Jenkins’ charge every chance.
Newsboy’s Tuesday selections TAUNTON 2.15 FALLS OF ACHARN 2.45 LADY CARO 3.15 ST LUKES CHELSEA 3.45 WICKED THOUGHTS 4.15 KHAFRE 4.45 BOBBI’S BEAUTY 5.15 CREST OF ARMS
SOUTHWELL 2.00 ICAQUE DE L’ISLE 2.30 SHADOWFAX OF ROHAN 3.00 TANDY’S BRIDGE 3.30 PECKFORTON HILLS (NAP) 4.00 HILLBERRY HILL 4.30 MOAB 5.00 CHER MONSIEUR
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WOLVERHAMPTON 4.23 LAPIDARIST 4.55 SORTED 5.30 COLORS OF FREEDOM 6.00 MONTEVETRO 6.30 FLICKA’S GIRL 7.00 DR ALI (NB) 7.30 MR LIGHTSIDE 8.00 TIME TO TAKE OFF 8.30 HELM ROCK
In the year up to March 2025, “there were 106 religious hate crimes per 10,000 population targeted at Jewish people, the highest rate for any religious group”, the Home Office report, released in October, said. “The next highest rate was for hate crimes targeted at Muslims, with 12 per 10,000 population,” it added.
If you have just booked a summer holiday, you may be on the hunt for a new suitcase. While some travellers congratulate themselves for only taking a backpack, the rest of us need a sturdy suitcase (or two).
For this year’s guide to the best suitcases, we’ve tried everything from the July and Antler cases you’ve seen all over your Instagram feed to classics like Samsonite, Rimowa and Trunki for the kids. We’ve tested soft shell and hard shell options, including lightweight and expandable suitcases. This article focuses on large, checked luggage, but we also have a guide to the best carry-on luggage, if that’s what you’re after.
You can read our full reviews below, where we’ve concentrated on medium-sized suitcases so that you can better compare prices and weights. Below that, you can find answers to frequently asked questions like how to find the most durable model and what is a regular cabin size.
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The best suitcases: At a glance
How to choose the best suitcase
First, decide between hard shell and soft shell. Hard shells (like polycarbonate) are brilliant for keeping your belongings safe and avoiding getting squashed, while soft ones are lighter and let you stuff a bit more in (plus they often have handy front pockets).
Next, consider weight and wheels. Four smooth, 360-degree spinner wheels will change your life at the airport. And every ounce counts, so look for “lightweight” construction so you don’t waste precious baggage allowance. Finally, don’t forget security and size. Make sure it has a proper TSA-friendly lock if you fly often. And always double-check the airline’s rules, especially if you’re buying a carry-on, to avoid gate surprises.
Tom Marchant, co-founder of luxury travel company Black Tomato, says the key to choosing the best suitcase is finding one that is durable and comfortable to use. “To make sure it withstands all elements, I look for a suitcase that’s completely waterproof. Reliable 360-degree spinner wheels and hard-wearing locks are also essential,” he says.
Vehicles not believed to be associated with the encampment were parked on the opposite side of the car park, where spaces remained available.
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It is understood that the travellers arrived on Sunday, March 22, although it has not been confirmed how long they intend to stay.
The Bolton News approached individuals at the site, where two women and a toddler were present.
The women politely declined to comment on their presence on the privately owned land.
The camp comes after Travellers moved their caravans onto Tesco car park in Horwich late last week.
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The Gypsy and Traveller way of life may involve travelling across the country and staying in different locations for varying periods in order to earn a living.
Gypsies and Travellers have rights, as do the owners of land where unauthorised encampments take place.
They are protected from discrimination under the Race Relations Act 1976 and the Human Rights Act 1998, alongside all ethnic groups with distinct cultures, languages or values.
If an encampment is on private land, it is typically the responsibility of the landowner to take steps to seek eviction.
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