A toddler with a rare fatal genetic condition has become the first child in the UK to receive a lifesaving gene therapy treatment on the NHS.
19-month-old Teddi has been treated with a revolutionary gene therapy known by its brand name Libmeldy – which has a list price of £2.8 million, and was the most expensive drug in the world when the NHS negotiated a “significant confidential discount” last year to make the treatment available to patients.
Despite this discount though, it still remains the most expensive drug licensed in Europe – with Teddi being the first child to be given the treatment.
The Northumberland toddler has a rare and fatal genetic disease called metachromatic leukodystrophy (MLD), and was sadly diagnosed with the condition along with her three-year-old older sister Nala in April last year.
MLD causes severe damage to the affected child’s nervous system and organs, and devastatingly results in a life expectancy of between just five and eight years.
ADVERTISEMENT
Parents thank Manchester doctors as toddler with fatal disease is saved by world’s most expensive drug / Credit: NHS England
Teddi was treated by a specialist service being delivered at Royal Manchester Children’s Hospital (RMCH) – which is collaboration with Manchester’s Centre for Genomic Medicine at Saint Mary’s Hospital.
The centre in Manchester is one of just five European sites administering the treatment – which works by removing the child’s stem cells and replacing the faulty gene that causes MLD, before re-injecting the treated cells into the patient – and is the only site in the UK.
ADVERTISEMENT
NHS England explains that the most common form of MLD usually develops in babies younger than 30 months, and due to the development of a crucial enzyme that leads to a build-up of fats that then destroy the protective layers around the child’s nerves, it can lead to loss of sight, speech, and hearing, as well as difficulty moving, brain impairment, seizures, and eventually death in childhood.
Ally and Jake have two beautiful girls, Nala and Teddi. In April 2022, both girls were diagnosed with metachromatic leukodystrophy (MLD), a genetic disease resulting in a life expectancy of five to eight years.
Teddi was the first person in the UK to receive the Libmeldy treatment outside of a clinical trial – which began when she was 12 months old.
Treatment first began with the removal of stem cells at the end of June, which were then treated before the transplant took place in August, and Teddi was discharged back to her home in Northumberland in October to become “a happy and healthy toddler” now showing no signs of the devastating disease she was born with.
ADVERTISEMENT
Sadly though, Teddi’s older sister Nala was not eligible for the treatment, as the clinical guidance requires the gene treatment to be administered before the irreversible damage caused by the disease progresses too far, NHS England explained.
Teddi and older sister Nala were both diagnosed with MLD in April 2022 / Credit: NHS England
Teddi’s mum, Ally Shaw, has praised Manchester doctors for saving her little girl.
“In April last year, our world was turned upside down when not one, but both of our daughters were diagnosed with MLD,” Ally said.
“Being told our first daughter, Nala, wasn’t eligible for any treatment, would continue to lose all functions, and die extremely young was the most heart-breaking and hardest thing to come to terms with. However, amongst the pain, was hope for our younger daughter, Teddi. We were told that a new gene therapy treatment had, luckily, recently been made available on the NHS.
“We are extremely privileged that Teddi is the first child to receive this on the NHS and grateful that she has the opportunity to lead a long and hopefully normal life.
ADVERTISEMENT
“Without this treatment, we would be facing both our children being taken away.
“We would like to say a huge thank you to our specialists, doctors and nurses and all the staff at Royal Manchester Children’s Hospital who have been fantastic in caring not just for Teddi, but us as a family.”
19-month-old Teddi has been treated with a revolutionary gene therapy / Credit: NHS England
NHS England has called this “a huge moment of hope” for parents and their babies who are born with this devastating inherited disorder.
Speaking on the success of the treatment, NHS chief executive Amanda Pritchard said: “Thanks to advancements in gene therapies, and the commercial ability of the NHS to strike deals for cutting-edge drugs and then deliver them through our phenomenally skilled specialist staff, children born with this condition now have the opportunity to lead normal, healthy lives.”
Previous treatment options for MLD on the NHS were limited to managing symptoms and providing supportive care.
But now, the new Libmeldy treatment will be available to babies and young children with no clinical signs or symptoms, as well as those with early symptoms of the condition, so long as they can still walk independently and with no evidence of cognitive decline.
Featured Image – NHS England
Manchester
Bar Posie – The beautiful new cocktail bar with an oyster happy hour from the team behind 10 Tib Lane
Daisy Jackson
The team behind Manchester’s 10 Tib Lane restaurant are ready to open a brand-new city centre cocktail bar, with an oyster happy hour.
They have announced that Bar Posie will be opening next week in the old Philpotts sandwich shop, right off Market Street.
The brand-new bar for the city centre will be serving cocktails, small plates and bar snacks, at the foot of Bruntwood SciTech’s Bloc building (also home to the Reset by Form pilates studio).
Bar Posie will be doing an aperitvo and oyster happy hour every Tuesday to Sunday between 12pm and 4pm, with £8 aperitivo and oysters for a quid.
It’s all coming from the 10 Tib Lane team, which opened in the old Bock Biere site back in 2021, transforming the space into a cosy multi-storey restaurant with seasonal sharing dishes.
This week, Bar Posie has shared a sneak peek of its menu, which will feature quality plates like confit chicken and wild mushroom croquettes, pork belly skewers, and a bitter leaf salad with buttermilk dressing.
As for drinks, expect cocktails like a cacao nib negroni, a classic vodka martini, and ‘La Isla’, a blend of Aperol, almond, Takamaka koko, mango and melon soda and acid.
That’s alongside conventional and natural wines, craft beer, and plenty of coffee.
Cocktails at Bar PosieHighlights of the snack menuA selection of snacks and cocktails at Bar PosieBar Posie is just off Market StreetInside Bar PosieInside Bar PosieCredit: The Manc Group
The space itself will be split into a mix of cosy booth seating, bar seats, and al fresco dining across two levels, with the cocktail bar at the very heart of everything.
Sophie Robson from Posie said: “We’re thrilled to finally be opening the doors to Posie. We’ve put all our passion and expertise into curating a menu that feels fresh and exciting, and into creating a space where people feel comfortable, looked after and relaxed.
“We can’t wait to welcome guests and show them the best of Posie.”
Matt Pazos, Retail Commercial Manager for Bruntwood SciTech, commented: “We’re delighted to welcome Posie to the Bloc community.
“The team’s unique style is clear to see in the space, transforming it into a beautiful and inviting bar with an innovative menu offering that is testament to their expertise.
“Posie will make a fantastic addition to Manchester’s food and drink scene and we can’t wait to see how the brand grows in the coming months.”
Bar Posie will open in Bruntwood SciTech’s Bloc building on Tuesday 4 November.
Fast-rising alt-rock cult favourites Keo announce Manchester gig on new UK tour
Danny Jones
Up-and-coming alternative rock band Keo have just announced a new UK tour and “most ambitious chapter yet” in terms of live performances, including a Manchester gig that we CANNOT wait for.
Combining the likes of post-grunge, garage rock and more, Keo are one of the most exciting and fast-emerging new acts in the space right now, having seen their recent run of half a dozen domestic shows sell out completely.
Pulling influences from artists of The Smashing Pumpkins and Soundgarden, as well as most notably fellow contemporaries and former tour partner, Wunderhorse, they’re well-positioned at the front of the guitar-driven revival and are bound for big things. We’re by no means the only ones banking on it either…
Having been described as “already that band” by Dork and delivering “a sound that has given UK guitar its biggest kick up the fretboard in years” by Rolling Stone, you can bet tickets for these shows will be snapped up in seconds, too.
UK and Europe spring 2026. Pre-sale: 03 Nov 2025 10AM GMT On Sale: 05 Nov 2025 10AM GMT pic.twitter.com/Xz1km0Z93O
Set to play their biggest Manchester venue to date, Keo will be playing the O2 Ritz on Whitworth Street next spring, and let us tell you, that sprung floor is not ready…
Co-fronted by two brothers, Finn and Conor Keogh (originally from Devon before ultimately getting their music careers underway in the capital), the now London-based group make quite a racket for just the four of them.
That being said, they also do quiet moments well, too, as seen in several of the ‘calm before the storm’ breakouts in songs like ‘Thorn’, ‘Fly’, ‘Crow’ and many more.
If you like anything close to grunge or even just shoegazey riffs, trust us, they’ll be right up your street.
One of the most exciting parts about this lot is how feverishly their fans have packed out their audiences all over the country, somehow learning every single word to every song before most of the material had even been released on any kind of platform. They’ve led with their live reputation – and it shows.
Case and point – the crowd at The Key Club in Leeds, where our mates over at The Hoot got to witness them up close and personal as the entire room erupted in a chorus of screams about a girl called Amber:
“To be playing venues like these with only five songs out still feels surreal”, says lead singer Finn Keogh. “We always imagined we’d reach this level after years of supporting other bands, but somehow we’ve skipped that step.
“It’s mad, come March, our biggest indoor shows will have been our own. Electric Ballroom [in London] is a special one for me personally; I’ve seen some life-changing gigs there. To be on that stage this time around is going to feel unreal.”
Listing a total of 16 live show dates up and down the country throughout March and April of 2026, it’s fair to say we Mancs are excited to see them playing their biggest room in our city to date, having absolutely smashed Gorilla this past October.
Tickets for Keo at the O2 Ritz in Manchester go on sale next Wednesday, 5 November at 10am; you can get ready to grab yours right HERE.
The debut release from Keo has delighted fans and critics alike, and their Manchester gig is sure to be a stormer.