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.
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.
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.
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.
“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
Heaton Park’s ‘Gallagher Hill’ where people have been watching Oasis for free is no more
Thomas Melia
The Heaton Park viewpoint coined ‘Gallagher Hill’ which fans flocked to to watch Oasis for free has been closed off ahead of the remaining gig dates.
The particular high area of Heaton Park has gone viral online after Oasis fans have been using it to watch the Live ’25 shows for free, with a distant view of the huge screens.
But as thousands of ticket-holders flock back to the remaining Manchester gigs of Oasis Live ’25, fans who couldn’t manage to get any tickets will be disappointed to learn that the viral viewing point Gallagher Hill has been shut down.
Usually, this hill section of the Manchester green space isn’t filled with Gallagher supporters – it’s normally home to a herd of cows who use this land to graze and walk about on throughout the day.
Huge fences have now been erected around the area to prevent any further groups from gathering, with Oasis still set to perform on Wednesday, Saturday and Sunday.
Manchester City Council has said that there are also around 300 young trees that have been planted in this part of Heaton Park to develop a new woodland area.
The purpose of the fencing is ‘dual purpose’, a council spokesperson said: “Both to protect the environment from further damage and to dissuade people from gathering there. The necessary measure means the concert will no longer be visible from this area.”
After seeing videos of fans in this particular area, one TikTok user checked it out for herself asking her followers: “Would you get on Gallagher hill now?” before panning her camera to show cows grazing on the land.
Although fans of the Manchester icons were flocking to this spot in order to join in on the Oasis fun from afar, issues have been raised via safety concerns of visitors, the cattle herd and reports of litter.
Fans are now being directed to enjoy the many, many events taking place in the city centre, including the MCR Live Hub at Piccadilly Gardens.
‘Gallagher Hill’ in Manchester today ahead of the next Oasis shows. Credit: The Manc Group
Some fans have been very understanding reasoning this fair decision admitting, “Probably because of security and threats unfortunately”, while others express their disappointment asking, “How sad do you have to be to put that up?”.
One social media user, who was planning on taking a family member to this brand new Manchester landmark commented, “They could’ve utilised Gallagher hill”.
The fan went on to pose the question of making it an official viewpoint for concerts, posing the question, “£30 entry fee, is that too steep?”.
Councillor John Hacking, Executive Member for Employment, Skills and Leisure, Manchester City Council, said: “The atmosphere across Manchester has been electric over this last week with the whole city swept up in Oasis fever and peaking over the weekend with the first two hugely successful homecoming concerts at Heaton Park.
“As you would expect given the size of the concerts and numbers of people attending, we go through a continuous process with partners of re-assessing the plans in place for the concerts to ensure both public safety and that any environmental impact on our award-winning park is minimalised.
“The steps being taken ahead of the next concert regretfully mean the distant view of the large screens behind the event stage will no longer be there. Unfortunately our hand has been forced in having to put these additional measures in place to protect the very recent extensive planting of young trees in that location as we try to establish a new woodland area in the park, and the wellbeing of our cattle herd in the field, as well as to keep people in the park safe.
“Our advice to music fans who don’t have tickets for the concerts is to head into the city centre instead. The whole city is going all out to celebrate and help everyone have a good time. We’ve got some fantastic things going on with a real party atmosphere for everyone to enjoy whether they’ve got tickets for the Oasis gigs or not.”
New app launches taking music fans on an immersive AR tour around Manchester
Emily Sergeant
The history of Manchester’s globally-renowned music scene is now being celebrated through the launch of a unique new app.
Manchester Music Mooch is an app that takes you on an immersive journey of the city’s iconic musical heritage locations, all while giving emerging artists a platform to shine.
Made possible through The National Lottery Heritage Fund, thanks to money raised by National Lottery players, and by using the power of Augmented Reality (AR), the app takes music lovers on an interactive trail across five grassroots music destinations.
The app was created by MediaCity-based Dig Media and award-winning app developers, ArcadeXR, ahead of an expected 1.3 million music tourists arriving in Manchester this summer.
It was developed in collaboration with Manchester Digital Music Archive, Salford University, Toasted Productions, and the Royal Northern College of Music (RNCM), as well as with support by Visit Manchester and ABID.
Some of the famous grassroots music sites featured on the toor included like Tony Wilson Place, Band on the Wall, Fat City Records, and the Roadhouse.
Influential music spots in the Oxford Road Corridor like Manchester Academy, Royal Northern College of Music (RNCM), and the former BBC building, can also be explored on the tour, as well as influential clubs in the Gay Village.
Loads of well-known and upcoming musical names will be providing the narrative for the tour along the way, such as DJ Paulette, Rowetta, Luke Una, and even Middleton-born singer songwriter JP Cooper.
A new app has launched and it’s taking music fans on an immersive AR tour around Manchester / Credit: Supplied
The app’s launch comes as the city celebrates a sensational summer of live music, with a whole series of music-themed activities taking place across the city as part of Manchester City Council’s MCR Live ’25 campaign – including Wild In Art’s Music for the Senses art trail.
“Manchester’s music history is globally renowned, but the city often struggles to convey its story cohesively,” commented Simon Marsland, who is the founder of app creators, Dig Media.
“With Dig Media’s expertise in media production, archiving and technology, alongside extensive local and international music networks, we’re spearheading a resilient way of sharing Manchester’s musical legacy never done before.”