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Jesy Nelson brands twins SMA diagnosis a ‘matter of life or death’ as she slams repeated GP failures

FORMER Little Mix star Jesy Nelson has spoken candidly about the ‘heartbreaking’ health challenges her twin daughters have faced.

The singer and campaigner has opened up about how her babies, Ocean Jade and Story Monroe, were failed to be diagnosed with Spinal Muscular Atrophy (SMA Type 1) despite numerous consultations with healthcare professionals.

Jesy Nelson opened up about her daughters’ ‘life or death’ diagnosis and GP failuresCredit: Sky
Jesy is campaigning to raise awareness of SMA and campaigning for the condition to be added to the NHS newborn heel-prick testCredit: Sky

In an interview on Sky News’ The UK Tonight programme, the former girl band star admitted that the condition was only picked up on when they were six months old – by her mum.

Although health visitors and GPs performed regular checks, the early symptoms of the rare genetic disease – specifically a lack of leg movement – went unnoticed.

The 34-year-old teared up as she explained her campaign for the UK to include SMA screening in the routine newborn heel prick test.

Speaking to host Sarah-Jane Mee, she said: “People are starting to take notice and take it seriously, but it never should have took for me to come along for it to be taken seriously and that’s the part that makes me feel so angry.

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“This isn’t just anything. This is a matter of life or death for someone’s child and who gets to decide that?

“Who has the right to decide whether my child is going to be in a wheelchair or not when we’ve literally had three life-changing treatments since 2018?

“The fact that it’s still a thing and we’re still having to scream and shout about it is just mad to me.”

She promised: “I will not stop on my socials talking about it. Trying to do as much TV… yes, it’s big but there’ll still be lots of other people that don’t know about this, so I’ve got to stay noisy.

Following a conversation with UK Health Secretary Wes Streeting, she admitted: “It is so difficult… it’s like, yes, I had that open and honest conversation with you and you said all the right things, but what are you going to do now?

“Now that I’m not in front of you, are you going to continue?”

She reflected on the missed opportunities during early check-ups and urged: “The fact that there were healthcare visitors around my house a lot and we took them to the GP and not one of them saw any of the signs.

“Thank God for my mum, because I dread to think what position I’d be in now if my mum hadn’t have said anything to me.

“It’s one of them things that I constantly go over and I have to sometimes stop myself from doing it because I will drive myself insane.”

Jesy added that the painful diagnosis has changed her outlook for her daughters’ future.

She said: “I don’t want people to think that if you’ve got disability that that defines you because it definitely doesn’t.

“But I’ll openly say if I could have it the other way, I definitely would. Why wouldn’t I want my children to walk and live a fulfilled life?

“I just pray that it does get changed and it does become part of the heel prick test, because the amount of heartbreak and hurt that I’ve had to endure, I’ll never be able to explain it.”

The Boyz hitmaker was previously diagnosed with twin-to-twin transfusion syndrome (TTTS).

The high-risk pregnancy included a 10-week hospital stay and life-saving emergency surgery.

The Brit Award-winner has launched a petition to force the Government to enforce a non- invasive £4 blood test at birth.

Symptoms of SMA depend on which type of condition, but the most common include floppy or weak arms and legs, as well as swallowing and breathing problems.

If untreated, the life expectancy of a baby with SMA Type 1 is two years and intervention is ­considered critical in limiting long-term impacts.

It could help avoid 33 babies a year left needing a wheelchair for life.

The former Little Mix star has had a tough time after she split from her fiance Zion Foster.

Jesy and Zion first began dating in 2022 after years of friendship.

In January 2025 they announced they were expecting identical twins.

The couple parted ways following the birth of their twin daughters, but remain close as co-parents.

Jesy spoke to Sky News about the twins’ health battleCredit: Sky
Ocean and Story have Spinal Muscular Atrophy Type 1 — the most severe form of a rare diseaseCredit: Instagram/Jesynelson
The couple parted ways following the birth of their twin daughtersCredit: jesynelson/Instagram

Spinal Muscular Atrophy: Signs and symptoms

Spinal muscular atrophy is a disease which takes away a person’s strength and it causes problems by disrupting the motor nerve cells in the spinal cord.

This causes an individual to lose the ability to walk, eat and breathe.

There are four types of SMA – which are based on age.

  • Type 1 is diagnosed within the first six months of life and is usually fatal.
  • Type 2 is diagnosed after six months of age.
  • Type 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
  • Type 4 is the rarest form of SMA and usually only surfaces in adulthood.

What are the symptoms?

The symptoms of SMA will depend on which type of condition you have.

But the following are the most common symptoms:

• Floppy or weak arms and legs

• Movement problems – such as difficulty sitting up, crawling or walking

• Twitching or shaking muscles

• Bone and joint problems – such as an unusually curved spine

• Swallowing problems

• Breathing difficulties

However, SMA does not affect a person’s intelligence and it does not cause learning disabilities.

How common is it?

The majority of the time a child can only be born with the condition if both of their parents have a faulty gene which causes SMA.

Usually, the parent would not have the condition themselves – they would only act as a carrier.

Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.

If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get spinal muscular atrophy.

It affects around 1 in 11,000 babies.

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‘Vanished’ review: Kaley Cuoco’s France-set thriller lacks spark

In “Vanished,” premiering Friday on MGM+, Kaley Cuoco plays Alice, an archaeologist, a fact she repeats whenever she’s asked about herself, without particularly seeming like one, apart from passing mentions of Byzantine caves and “one of the earliest examples of Christian worship” to make her sound professional. Sam Claflin plays Tom, who works for a charity organization dealing with Syrian refugees in Jordan; in a flashback we get to see them meet cute on a dusty Jordanian road, where he has a flat tire and no spare. Alice gives him a lift to camp; they banter and flirt after a fashion. He does something heroic within her sight.

They have been long-distance dating for four years, meeting up, as Alice describes it, “in hotels all over the world” where they “actually want to have sex with each other all the time.” Currently they are in Paris (in a $500-a-night joint — I looked it up). But Alice, now working in Albania, has been offered a job as an assistant professor of archaeology at Princeton, which would allow her to settle down with Tom in a school-provided apartment and “build a life that’s mine, not just uncovering other people’s.” After an uncomfortable moment, he signs on, saying, “I love you, Alice Monroe.”

Would you trust him? Despite the script’s insistence otherwise, Cuoco and Claflin have no more chemistry than figures on facing pages in a clothing catalog. Fortunately for the viewer, Tom disappears early from the action — ergo “Vanished.” The couple are traveling by train down to Arles, where another hotel awaits them, when Tom leaves the car to take a call and never returns; nor can he be found anywhere on the train.

This happily makes room for the more interesting Helene (multiple César Award winner Karin Viard), a helpful Frenchwoman who steps in as a translator when Alice attempts to get an officious conductor to open a door to a room he insists is for employees only, and rules are rules. (Is he just being, you know, French, or is something up?)

They meet again when Alice gets off the train not in Arles but Marseilles; after she has no more luck with police inspector Drax (Simon Abkarian), who insists a person isn’t missing until 48 hours have elapsed, than with the conductor, she’ll turn to Helene again, who has the advantage of being an investigative reporter. (She’s also been made diabetic, which has no effect on the action other than halting it now and again so she can give herself, rather dramatically, a quick shot of insulin. Like Drax begging off because he’s late meeting his wife for an Alain Delon double feature, it’s a tacked on bit of business meant to suggest character.) Together they’ll ferret out and follow clues, as Alice comes to realize that it takes more than the occasional gauzy romantic getaway to really know a person, and Helene gets closer to nailing a big story.

Directed by Barnaby Thompson, whose credits are mostly in producing (“Wayne’s World,” “Spice World”), and written by his son, Preston — together they made the 2020 film “Pixie” — the series begins with a flash forward in which Alice flees for her life out an upper-story window, signifying action ahead. And indeed, there will be, leading to a climactic scene I don’t suppose was meant to make me laugh, but did, magnifying as it does one of the confrontational cliches of modern cinema. Many of the series’ notions and plot points (though not that particular one) may be found in the works of Alfred Hitchcock — who, you may remember, made a film called “The Lady Vanishes,” from a train yet — though they have been given new clothes to wear. But where Hitchcock never waited long to show you when a character wasn’t what they seemed, that information is held on here nearly to the end, with some added twists along the way to keep you confused.

Cuoco (unusually brunet here), has been good in many things, most notably her funny, winning turn as Penny across 12 seasons of “The Big Bang Theory” and more recently as the hallucinating alcoholic heroine of the “The Flight Attendant,” but she feels out of joint here. She’s not well served by the pedestrian direction and dialogue, but comes across as a person playing a person, rather than as the person she’s playing. Perhaps by virtue of their accents, the French actors feel more real; France, as usual, looks great.

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‘I went for a robot massage – it was one of the strangest experiences of my life’

During a trip abroad, I let the hands of a futuristic robot melt my worries away as it pivoted and descended on my pressure points during a massage like never before

I was guided through the spa and shown to my treatment room, ready to melt my worries away with an afternoon massage. Yet, as I entered the room, I wasn’t greeted by a cheery therapist but by a robot with its two extendable metallic arms ready to pummel.

Like most people, I’ve always enjoyed a massage – that feeling of your body melting away as a talented therapist works through the tense knots and aching joints. It’s always a treat, and not something I have often experienced, so when I had the opportunity to get a shoulder and back massage during my trip to Las Vegas this month, I jumped at the chance.

But this would be very different from anything I had experienced before. I was about to try out the AI robotic massage at Qua Spa in Caesars Palace, the first to be available on the iconic Las Vegas Strip.

Author avatarAmy Jones

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I checked in for my Aescape Robotic Massage Experience at Qua Baths & Spa at Caesars Palace, and was asked for my clothing size. I was then taken to my treatment room, where a pair of athletic leggings and a short-sleeved top were perfectly hung on the back of the door.

For an AI massage at Qua Spa, guests are required to change into the provided, tight-fitting clothing so the robot’s metallic arms can glide smoothly across the body. It also avoids the embarrassment of feeling vulnerable in front of an android, which I was thankful for.

It was fascinating to see the metallic arms move around my body on the screen. Nevertheless, I watched warily as my mechanical therapist targeted each pressure point, unsure whether to fully trust the apparatus.

But after a while, as I settled into my surroundings with my new acquaintance, I began to relax. The base of the robot’s arms was warm, and every one of its movements felt smooth and effective, providing relief on my back and shoulders.

At times, the arms would hold their position for a few seconds, putting more pressure on that area. I thought it was a malfunction at first, but after a couple of times, I came to understand the process. Plus, knowing I could relieve the pressure at any given moment put me at ease.

My worries melted away, and I began to get used to this cutting-edge massage robot. Undoubtedly, it differed from a conventional massage, but it provided an effective release during my 15-minute session.

It also avoided the awkward question of, ‘Is this pressure ok for you?’, and allowed me to be in full control of my treatment with a swipe of a button. It’s an experience that will remain etched in my memory, but one I’d recommend trying out for a touch of relaxation!

The Aescape Robotic Massage Experience is available for $44 (£31) for 15 minutes or $88 (£63) for 30 minutes, at Qua Spa in Caesars Palace, Las Vegas. For more information, you can visit their website.

Do you have a travel story to share? Email webtravel@reachplc.com

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‘Blind Side’ star on life support, but improving, reports say

Actor Quinton Aaron, who shared the screen with Sandra Bullock in “The Blind Side,” is reportedly showing signs of improvement after he was hospitalized for a blood infection last week.

Margarita Aaron, the actor’s wife, told Fox News and TMZ on Monday that her husband is “making significant progress” in his recovery, making minor body movements including opening his eyes and giving a thumbs-up. Though the actor is partially breathing on his own, Margarita Aaron said her husband remains on breathing assistance and antibiotics, according to Fox News.

A representative for Aaron did not immediately respond to a request for comment on Tuesday

“He’s a fighter; he’s a very strong fighter, and you know, he is making progress day by day,” she told Fox News, “and I believe God’s got him, and he believes God’s got him.”

The 41-year-old actor was hospitalized last week in Atlanta after he collapsed while walking up the stairs in his apartment, TMZ reported. He reportedly experienced pain in his neck and back days before his collapse and lost feeling in his legs before he fell. Aaron’s wife said she called 911 and her husband was slipping in and out of consciousness en route to the hospital, where he has since undergone several tests, according to TMZ. The outlet reported on Tuesday that doctors found a “rare cyst” on the actor’s spine.

Nonprofit organization Veterans Aid Network organized a GoFundMe page in support of Aaron, who the organization described as “part of a veteran family himself.” The organization said it has a “longstanding relationship” with the actor and seeks to raise $35,000 to help his loved ones pay for medical expenses and other recovery-related costs. Donors have raised more than $40,000 as of Tuesday afternoon.

“Quinton has spent his life inspiring others, reminding us that compassion and humanity still matter in this world,” reads the GoFundMe description. “Now, as he faces one of the hardest battles of his life, let’s surround him and his loved ones with that same compassion, strength, and care.”

In an update shared to the fundraiser on Monday, Veterans Aid Network said that Aaron “opened his eyes and has some feeling in his foot!” The update also said he remains on life support and will need a wheelchair upon his release.

Aaron has acted in scores of films, according to his IMDb page, but is best known for his turn in “The Blind Side.” The 2009 drama was based on Michael Lewis’ 2006 book of the same name, which tracked the story of football star Michael Oher, who was plucked from homelessness and poverty when taken in by wealthy couple Leigh Anne Tuohy and Sean Tuohy. The family is credited with Oher’s football success. Oher was an All-American player at Mississippi and a first-round draft pick for the Baltimore Ravens in 2009.

Aaron starred as Oher and Bullock as Leigh Anne Tuohy. The film was nominated for two Academy Awards and earned Bullock a prize in the actress in a leading role category.

“The Blind Side” was in the news again in 2023 when Oher sued his self-proclaimed adoptive parents, alleging the pair never officially adopted him and tricked him in 2004 into signing a legal document that deemed them his conservators. The pair denied the allegations and said the athlete’s lawsuit was a “shakedown.”

In September 2023, a Tennessee judge ordered the end of the conservatorship.

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Japanese American soldiers once branded ‘enemy aliens’ to be promoted posthumously

Seven Japanese American soldiers will be promoted to officer ranks in a solemn ceremony Monday, eight decades after they died fighting for the U.S. during World War II despite having been branded “enemy aliens.”

The seven were students at the University of Hawaii and cadets in the Reserve Officer Training Corps, on track to become Army officers, when Japan bombed Pearl Harbor on Dec. 7, 1941. They initially served in the Hawaii Territorial Guard, but soon after the attack the U.S. barred most Japanese Americans from service and deemed them enemy aliens.

The seven cadets instead worked with a civilian labor battalion known as “Varsity Victory Volunteers,” which performed tasks such as digging ditches and breaking rocks, until American leaders in early 1943 announced the formation of a segregated Japanese American regiment. The seven were among those who joined the unit, known as the 442nd Regimental Combat Team.

The combat team, along with the 100th battalion composed of mostly Japanese Americans from Hawaii, went on to become one of the most decorated units in U.S. history. Some of its soldiers fought for the Allies even as their relatives were detained in Japanese American internment camps because they were considered a public danger.

“It is important for us to really kind of give back and recognize our forefathers and these veterans that we stand on the shoulders of,” said 1st Sgt. Nakoa Hoe of the 100th Battalion, 442nd Regiment, what the unit is now known as in the Army Reserve. He noted the once-segregated unit now includes a “multitude of cultures.”

The seven “sacrificed so much at a challenging time when their loyalty to their country was questioned and they even had family members imprisoned,” he added.

The seven men — Daniel Betsui, Jenhatsu Chinen, Robert Murata, Grover Nagaji, Akio Nishikawa, Hiroichi Tomita and Howard Urabe — died fighting in Europe in 1944. All but Murata were killed during the campaign to liberate Italy from Nazi Germany. Murata was killed by an artillery shell in eastern France.

They will be promoted Monday to 2nd lieutenant, the rank they would have had if they completed the ROTC program. Relatives of at least some of the men are expected to attend the ceremony, scheduled to be held in a Honolulu park.

Even though Hawaii was not yet a state, the cadets were American citizens because they were born in Hawaii after its annexation in 1898.

“Fighting an injustice at home, these seven men later gave their lives fighting on the battlefields of Europe,” said a news release from U.S. Army Pacific. “They were unable to return to school and finish their commissioning efforts.”

Monday’s ceremony capping efforts to honor the men comes amid growing concern and criticism that President Donald Trump’s administration is whitewashing American history ahead of the nation celebrating 250 years of its independence, including last week’s removal of an exhibit on slavery at Philadelphia’s Independence National Historical Park.

Last year, the Pentagon said internet pages honoring a Black medal of honor winner and Japanese American service members were mistakenly taken down — but it staunchly defended its overall campaign to strip out content singling out the contributions by women and minority groups, which the Trump administration considers “DEI.”

Honoring the seven isn’t about DEI — diversity, equity and inclusion — but recognizing them for their merit and that “they served in the ultimate capacity of giving their lives for the country,” said Lt. Col. Jerrod Melander, who previously led the University of Hawaii’s ROTC program as professor of military science.

Melander said he launched the commissioning effort in 2023 during former President Joe Biden’s administration and that the promotions were approved last year during the Trump administration.

The university awarded the men posthumous degrees in 2012. Laura Lyons, interim vice provost for academic excellence at the University of Hawaii at Manoa, called their promotions especially important.

“Everyone’s contribution to and sacrifice for the ideals of freedom and the security of this country should matter and should be acknowledged, regardless of who they are,” Lyons said.

Kelleher writes for the Associated Press.

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