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Our brave Jasper is slowly losing the ability to walk – a drug could change that but the NHS cruelly won’t fund it
THE family of a 10-year-old boy who’s losing the ability to walk have described the “nightmare” battle they face with the NHS to access a free drug for help.
Rosie and Pete Day from Horsham, West Sussex have been fighting for the drug givinostat for their son Jasper who has Duchenne muscular dystrophy (DMD).


Duchenne is a genetic muscle wasting condition that causes progressive muscle weakness.
In the UK, an estimated 2,500 people are living with the condition
The Day family have twins Jasper and Arabella, and two older daughters.
Both Jasper and his twin sister Arabella have Duchenne, with Arabella a carrier and Jasper the most affected – as the condition mostly affects boys.
Givinostat, developed by ITF Pharma UK, can slow progress of Duchenne – keeping children on their feet for longer – and is being offered for free by a drug firm while it goes through the process of NHS approval.
Only some NHS trusts across the UK, and few in England, are giving out the drug despite it being part of an early access programme since November.
Families are now facing a “cruel” postcode lottery over who gets the medicine and are in a race against time, according to the charity Duchenne UK.
Some NHS trusts are refusing to supply the drug while others delay it by drawing up lists of who they think should get it first.
NHS trusts say they need to pay for monitoring the drug – around £1,900 per year per patient – out of their own budget.
Rosie said: “We try and live in the moment and, in this moment, there’s an opportunity to make a massive change to Jasper.
“We’re not going to cure it, but this drug gives him the best chance of having the early life that he wants to have and what every parent wants to give their child.
“It’s so close – and yet we’re stuck.
“We’re stuck in this process where there’s something in reaching distance that could make a huge difference to keep him walking, keep him active, keep him with his siblings in the garden, keep him walking up the stairs, all of those things, and it just feels that we can’t quite get there.
“We’re on the finishing line to get something that will make a difference and we can’t quite get there because of the system we’re in.
“The drug is not going to cure it, but it will give him the childhood you would wish to give your child – to keep them playing football, coming on dog walks, being able to walk up the stairs, playing the French horn, all of those things that you dream your child is going to get to do.”
She added: “It feels like a nightmare, because you know that the doctors want to give it, but when it comes to getting the drug in his mouth and seeing what it would do, we’re stuck.
“It’s a lottery, basically, depending on where you are in the country … and within NHS trusts themselves.”
‘When will I get the drug, mummy?’
Jasper is under the care of the Evelina London Children’s Hospital, which is only now starting to contact patients and is drawing up a priority list for who gets the drug first.
“Every day that passes by is a day that we can see Jasper decline and see him struggling with his muscles,” Mrs Day said.
“Two weeks ago, he asked me, ‘When will I get the drug, mummy?’
“We’re stuck in a situation over who’s going to make those decisions regarding who gets the drug – of whether Jasper gets it or another boy.
“For every boy it’s heartbreaking, because someone ultimately is not going to get the drug at that moment based on the current criteria.”
She continued: “If Jasper stops walking, we’re not going to get that back.
We’re stuck in a situation over who’s going to make those decisions regarding who gets the drug – of whether Jasper gets it or another boy
Rosie Day
“Every day matters. Six months ago, Jasper could walk up and down the stairs easily. He can’t do that now and Pete has to push him up the stairs every night.
“Yet we can’t give him something that is as simple as two spoons full of medicine and a blood test, and a little bit of maybe resource looking at the blood test results – that is what is standing in our way.”
Rosie said it was unclear how the Evelina is “going to make a fair choice” because knowing who will lose mobility is not an exact science.
And she said the process is “hugely subjective” because there is no linear decline in the condition and the decisions made by NHS trusts could end up being “completely wrong”.
According to Duchene UK, boys whose condition is getting worse risk falling off the list entirely while waiting for the drug.
Around 500 boys in the UK are eligible for givinostat, which can be taken at home like Calpol, with hospitals then doing follow-up blood tests of around eight in the first year, followed by twice a year thereafter.


Children may also need an ECG, though these are already part of routine Duchenne monitoring.
Emily Reuben and Alex Johnson, founders of Duchenne UK, said: “As time ticks by, more boys are losing out on their chance to access givinostat.
“This is a simple treatment, which can be easily managed at home, and requires uncomplicated blood tests to monitor. It’s free to the NHS and could offer real hope for patients and their families.
“The delays are cruel and the postcode lottery is unjustifiable. We are calling on the NHS to urgently make this available to both ambulant (walking) and non-ambulant boys.”
To date, all health boards in Scotland are rolling out the drug, alongside those in Swansea and Cardiff.
Leicester Royal Infirmary was the first trust in England to give the drug, but the Evelina has not yet, and neither have trusts in Manchester, Liverpool and Newcastle.
Great Ormond Street Hospital is working to supply the drug.
A spokesman for the Evelina said: “We have begun contacting families of all existing Evelina London patients who may be eligible for givinostat and are working to set up appointments in the next few months.
“Our clinical team are working through our patient lists and are currently prioritising children who need the treatment most urgently, or are at a higher risk of losing movement (ambulation) soon.”
An NHS spokesman said: “The first National Institute for Health and Care Excellence (Nice) committee meeting to consider this treatment is scheduled to be held in July 2025, and if manufacturer ITF Pharma can offer a cost-effective price to enable Nice to recommend its use, the NHS will be ready to work with the company to explore fast-tracking access for patients.
“NHS England has published guidance on manufacturer-led early access schemes, which require trusts to cover substantial costs and find additional clinical resources to administer new treatments, and we understand a number of trusts across the country are preparing to offer givinostat via such a scheme.”
Parents have met with Health Secretary Wes Streeting to try and speed up access.
Duchenne muscular dystrophy (DMD)
Muscular dystrophies (MD) are a group of inherited genetic conditions that gradually cause the muscles to weaken, leading to an increasing level of disability.
Duchenne MD (DMD) is one of the most common and severe forms, it usually affects boys in early childhood; people with the condition will usually only live into their 20s or 30s.
The condition primarily affects boys because it’s an X-linked recessive condition.
This means the faulty gene responsible for DMD is located on the X chromosome, and boys have only one X chromosome.
Early symptoms often involve delays in walking, difficulty getting up, and enlarged calves.
Over time, as the disease progresses, it can impact various parts of the body, including the heart and lungs.
Treatment focuses on managing symptoms and slowing the progression of the disease, as there is no cure.
Corticosteroids are a mainstay of treatment, and new gene therapies are also available for certain patients.
Givinostat (trade name Duvyzat) is a treatment for DMD that has been approved for use in boys aged six and older, regardless of the specific genetic mutation they have.
It’s a non-steroidal drug that works by inhibiting histone deacetylase (HDAC), which helps to reduce inflammation, muscle loss, and scarring.
While not a cure, givinostat can potentially slow down the progression of DMD and preserve muscle function.
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Iconic fizzy drink brand to launch alcoholic drinks for the first time

AN iconic fizzy drink brand is launching a range of alcoholic drinks for the first time.
Ka is known for its fruity, Caribbean-inspired soft drinks, often found in supermarkets and corner shops.

It’s now bringing out four new alcoholic mixed drinks which are sure to be popular over the summer.
They will come in the flavours Black Grape, Fruit Punch, Pineapple and Karnival Twist.
Each of the drinks will have Ka’s popular flavours mixed with Caribbean white rum.
The 330ml cans will be sold for £2.79.
The soft drink version is usually sold for between 60p and 80p. They launched in Wholesalers first and will be landing on convenience store shelves next week.
AG Barr, which owns Ka, said the new range was aimed at shoppers “looking to spontaneously grab drinks – whether en route to a social occasion, to be enjoyed at the park, or at a festival with friends”.
And with the weather heating up ahead of this weekend, it’s perfect timing.
Forecasters have said parts of southern England, including London, could see temperatures reach 28C on Friday evening.
Numerous brands have been racing to bring out new alcoholic canned drinks for the summer.
Shoppers have been going wild for the latest collection of tinnies from M&S, which include favourites such as mojitos, pina coladas and cosmos.
There’s also a mint and elderflower Hugo Spritz and a Limoncello Spritz.
Meanwhile Lidl is selling pre-mixed cocktail cans for the bargain price of 89p.
They include flavours like the Bitterol Spritz, Strawberry Daiquiri, Mojito and Pina Colada.
Rival Aldi brought out a similar range starting at 99p.
Their tinnies include Hard Seltzers and Spicy Margaritas.
How to save money buying alcohol
Alcohol can be pricey if you’re planning a party or hosting an event but there are ways to cut costs.
It’s always important to drink responsibly, here, Sun Savers Editor Lana Clements share some tips on getting booze for the best price.
Stocking up can mean big savings on drinks, especially if you want to buy wine or fizz.
The big supermarkets regularly offer discounts of 25% when you buy six or more bottles of wine. The promotions typically run in the lead up to occasions such as Bank Holidays, Christmas and Easter.
If you know you are going to need booze later in the year, it can be worth acting when you see offers.
Before buying your preferred drink make sure you shop around to find the best price – you can use a comparison site such as pricerunner.com or trolley.co.uk.
Don’t forget that loyalty cards can unlock better savings so make sure you factor that in too.
If you like your plonk, wine clubs can also be a good way to save money and try new varieties. You’ll usually have to pay a membership fee in return for cheaper price so work out if you will be buying enough to make the one off cost worthwhile.
Boohoo and PrettyLittleThing to make MAJOR AI change and it could lead to surge pricing on clothing
BIG names in fashion, including Boohoo and PrettyLittleThing, are making a major AI change and it could lead to surge pricing.
Debenhams Group brands are getting a tech makeover by using artificial intelligence to decide how much items will cost.

Brands owned by the group are now letting AI set prices in real-time, reacting instantly to trends, demand and what rivals are charging.
The retail giant has teamed up with AI firm Peak to make it all happen.
They reckon this AI system will mean more targeted discounts, so you’re more likely to see deals on stuff you actually want.
It also means the brands can avoid having piles of unsold clothes hanging around.
Dan Finley, chief executive of Debenhams Group, said: “We’ve totally changed how we do pricing.”
“AI helps us make faster, smarter choices, so we can give our customers better value.”
But experts are wary, warning that shoppers could be at the mercy of surge pricing, where AI algorithms automatically raise prices during periods of high demand.
Consumer champion Martyn James warns that “corporate-speak” can obscure the real purpose of these changes.
While the company talks about “automated pricing” and targeted discounts, James points out that “there is also nothing to stop the business increasing prices on demand either.”
He fears that without proper oversight, shoppers could be vulnerable to AI-driven “surge pricing,” as has been seen with hotels and Uber.
Echoing these concerns, consumer expert Scott Dixon believes this is about protecting profits first and foremost.
He said: “The use of AI clearly benefits Debenhams as they can protect profit margins, cut waste and implement surge pricing in-line with increased demand.
“Debenhams needs to show AI is working for its customers, not just shareholders.”
He also warns of potential price hikes during peak shopping periods like Black Friday and Christmas, stating that dynamic pricing is only fair if it works both ways.
Debenhams Group brands
DEBENHAMS Group (formerly known as Boohoo Group) has a whole stable of well-known brands under its umbrella:
- Boohoo: The original online fashion giant known for its trend-led pieces and affordable prices.
- PrettyLittleThing: Another fast-fashion favourite, offering a similar vibe to Boohoo but with its own distinct style.
- BoohooMAN: Bringing the Boohoo formula to menswear, with on-trend clothing and accessories for guys.
- Karen Millen: A more premium brand offering sophisticated and stylish clothing for women, often with a focus on occasion wear.
- Debenhams: The department store itself, now operating as an online marketplace selling a wide range of fashion, beauty, and home products.
The group also owns labels, including Nasty Gal, Coast, Misspap, Oasis, Warehouse, Burton, Wallis, and Dorothy Perkins.
Several retailers, including ASOS and Iconic London, are using AI to make online shopping more interactive.
One example is Nibble, an AI negotiation platform that lets shoppers haggle for discounts before adding items to their cart.
The technology enables a back-and-forth negotiation with a bot, and some users have reportedly secured discounts of up to 40% on ASOS Sample Sale purchases.
The option to negotiate only appears if it’s offered before adding an item to your cart.
In some cases, the feature is timed to pop up when a shopper hesitates over the buy button or seems ready to leave the site.
How to compare prices to get the best deal
JUST because something is on offer, or is part of a sale, it doesn't mean it's always a good deal.
There are plenty of comparison websites out there that’ll check prices for you – so don’t be left paying more than you have to.
Most of them work by comparing the prices across hundreds of retailers.
Here are some that we recommend:
- Google Shopping is a tool that lets users search for and compare prices for products across the web. Simply type in keywords, or a product number, to bring up search results.
- Price Spy logs the history of how much something costs from over 3,000 different retailers, including Argos, Amazon, eBay and the supermarkets. Once you select an individual product you can quickly compare which stores have the best price and which have it in stock.
- Idealo is another website that lets you compare prices between retailers. All shoppers need to do is search for the item they need and the website will rank them from the cheapest to the most expensive one.
- CamelCamelCamel only works on goods being sold on Amazon. To use it, type in the URL of the product you want to check the price of.
Incredible list of ex-F1 drivers, celebs and nepo babies bidding to win one of sport’s most iconic prizes
THE iconic 24 Hours of Le Mans race commences this weekend, with a stunning list of motorsport icons and ex-Formula One stars set to take part.
One of the iconic Triple Crown, alongside the Monaco Grand Prix and Indianapolis 500, winning the endurance event is one of the most sought after prizes in all of motorsport.


F1 stars have a strong recent history in the event, with Sauber’s Nico Hulkenberg winning with Porsche in 2015 and two-time F1 champ Fernando Alonso won Le Mans in back-to-back years in 2018 and 2019 with Toyota.
This years event sees 62 cars take to the grid, made up of 21 Hypercars, 17 LMP2 prototypes, and 24 LMGT3s and six teams making up the reserve list.
Among them, as many as 19 former F1 drivers are gearing up to compete, including former world champions, ex-Sky Sports F1 pundits and the relatives of three F1 race winners.
Jenson Button – who won the F1 title in 2009 – headlines the ex-F1 contingent on the grid as he teams up with Sebastien Bourdais, who raced for Toro Rosso in 2008/09, in the #38 Cadillac Hertz Team Jota.
F1 cult heroes including Kevin Magnussen, Antonio Giovinazzi, Robert Kubica, Kamui Kobayashi and Stoffel Vandoorne make up the grid, with Magnussen making his second appearance at the event and first since he was axed by Haas last season.
Paul di Resta is using his time wisely after being axed as a pundit by Sky Sports F1 in 2023 as he joins Jean-Eric Vergne in the 93 Peugeot Totalenergies.
Mick Schumacher and Eduardo Barrichello, sons of ex-Ferrari team-mates Michael Schumacher and Rubens Barrichello, make up the list of former F1 stars’ sons at the event.
Meanwhile, Pietro Fittipaldi, the grandson of two-time F1 champion Emerson Fittipaldi, is making his third appearance at the event.
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Stars who shone in F2 or F3 but struggled with the step up to F1 are also on the line-up.
These include the likes of Jack Aitken, Nyck de Vries and Will Stevens.
Former F1 star Felipe Nasr is teaming up with Pascal Wehrlein in the #4 Porsche Penske Motorsport, with the latter making his debut at the event.
Three ex-F1 stars are returning once again having won Le Mans multiple times.
Sebastien Buemi raced in F1 for two years but has gone on to win Le Mans a staggering four times to date, while both Brendon Hartley and Andre Lotterer have won the event three times.
An honourable mention for the event is MotoGP legend Valentino Rossi, who is making his second appearance at the event.
UK petrolheads can watch the race on TNT Sports or the Discovery+ App.
It starts at 4pm on Saturday.

