An eight-year-old Cheshire girl with a rare degenerative disease has become one of the first to receive a pioneering new treatment that will attempt to save her eyesight.
Amelia Carroll, from Poynton near Stockport, was diagnosed with CLN2 Batten disease – an incurable and fatal condition that affects roughly around 30-50 children in the UK – when she was just two.
The disease is caused by a change in a gene that is responsible for making a specific enzyme in the nervous system, and it results in seizures, a gradual decline in a child’s ability to walk, speak and see, as well as progressive dementia.
Amelia’s 11-year-old brother Ollie also has the same condition, yet has sadly already lost his eyesight.
“We have watched our son Ollie go blind, and now the same is starting to happen to Amelia,” mother Lucy Carroll explained, which is why her and her husband Mike decided to contribute to a fundraising campaign together with families of other children affected by the disease alongside the Battens Disease Family Association (BDFA) to help fund a world-first trail of a groundbreaking new treatment at Great Ormond Street Hospital (GOSH).
Over £200,000 was raised through the campaign, and clinicians and researchers at GOSH and ICH say the treatment programme has the potential to transform the quality of life for children living with CLN2 Batten disease.
Amelia became one of the first children in the world to receive the treatment, and is said to already be responding to it “perfectly”, CheshireLive reports.
For the past two years, enzyme replacement therapy has been used to help prevent neurological deterioration in children with CLN2 disease. The drug, called Brineura, was first approved for use on the NHS in 2019 and is administered directly into the brain by a regular infusion.
It has shown to restore enzyme activity and slow the onset of disability.
However, this infusion into the brain does not prevent children going blind, as the enzyme cannot cross the blood-retina barrier, and this means that the nerves in the eye cannot function and vision is lost, which is why clinicians and researchers at GOSH and ICH are trying a the treatment to prevent the onset of blindness instead.
To do this, GOSH said they are using the tiny amount of the drug leftover from the brain infusion and injecting it directly into the back of the eye.
The 18-month treatment trail – which is said to be being given on a compassionate use basis – hopes to prevent eyesight deterioration in children by providing the enzyme that the nerves in the back of the eye need to function.
Ms Carroll said “to save a child’s sight would be incredible”, and if it does indeed work, it would “make such a big difference to Amelia’s quality of life”.
“We just pray it works,” she added.
Speaking on the groundbreaking treatment trail, Professor Paul Gissen, from GOSH and the UCL GOS Institute of Child Health, said: “If successful, we hope our work can pave the way to saving the sight of more children with this disease to preserve their quality of life for as long as possible.”
Amelia’s father, Mike Carroll, said the “amazing” nurses and doctors treating his daughter were “incredible”.
Bob Vylan dropped from Manchester music festival following Glastonbury controversy
Danny Jones
English punk rap duo Bob Vylan have been dropped from an upcoming music festival in Manchester following the recent controversy surrounding their set at Glastonbury 2025.
The media storm surrounding their much-talked-about and heavily televised Glasto appearance has seen them reportedly dropped by their agency and their US Visas cancelled, along with multiple concerts – one of those being right here in Greater Manchester.
Bob Vylan were scheduled to play RADAR Fest at Victoria Warehouse in Stretford this weekend, but now the organisers have informed gig-goers that the artists will not be performing in their planned slot on Saturday.
The alternative music event did provide any additional details, posting nothing but this image:
For anyone unaware, Vylan were heavily criticised for the pro-Palestine chants, which Glastonbury itself has deemed as having “crossed a line”, labelling the chants against the Israel Defence Forces (IDF) as antisemitic.
Prime Minister Sir Keir Starmer has also commented on the situation.
In addition to RADAR, Vylan were also due to appear at Kave Fest in France the following Sunday, 6 July, but the music event has also decided not to host them.
The BBC also opted not to broadcast Northern Irish band Kneecap as part of their coverage this year, as the Belfast rap trio have also been outspoken on the issue, among many other musicians of late.
Responding to the decision on social media not long after the news broke, the act simply shared the post on their Instagram story along with the caption: “Silence is not an option. We will be fine, the people of Palestine are hurting. Manchester, we will be back.”
Trafford Centre launches school uniform drive to help disadvantaged Manchester families
Emily Sergeant
A school uniform drive has been launched at the Trafford Centre to support local families ahead of the new school year.
With schools across Greater Manchester soon set to be out for the summer holidays, many parents, guardians, and carers in the region may be looking ahead to the new school year in September, concerned about how they may be able to provide their children with the necessary uniform items needed.
According to a 2020 survey by The Children’s Society, 23% of parents reported that the cost of school uniforms led to their children wearing ‘ill-fitting, unclean, or incorrect’ items.
It’s these statistic that highlight the ongoing pressure faced by families.
This is why the Trafford Centre has partnered with both Manchester South Central Foodbank and local charity, Bridging the Gap, to launch a school uniform donation drive aimed at supporting more than 700 children across Manchester this summer.
The Trafford Centre launches a school uniform drive to help disadvantaged Manchester families / Credit: Trafford Centre
From now up until the 15 August, anyone heading to the region’s largest shopping centre is encouraged to donate new or pre-loved school uniforms.
“The cost of living crisis has deeply impacted our community, with more and more families unable to afford the essentials,” commented Emily Jeremy, who is the Assistant Project Manager at Manchester South Central Foodbank.
“As an anti-poverty charity, we recognised the need for school uniform support years ago. Though costs vary between schools, a full set of branded secondary school uniform can total around £150, which is a significant burden for many households.”
All items can be donated at the shopping centre’s Guest Services point / Credit: Darren Robinson Photography | Trafford Centre (Supplied)
Simon Layton, Centre Director at the Trafford Centre, added: “We’re proud to be working alongside Bridging the Gap and Manchester South Central Foodbank to support local families during these challenging times.
“School uniforms shouldn’t be a barrier to education, and we hope this initiative will ease some of the pressure many parents face as the new school year approaches.”
The school uniform donation drive is running up until 15 August.
All items can be taken to the Trafford Centre’s Guest Services Lounge, which is located on Lower Regent Crescent next to M&S, and they must be clean and free from stains or damage.
Emily Sergeant -
14th January 2022 
