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).
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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.
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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.”
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Amelia’s father, Mike Carroll, said the “amazing” nurses and doctors treating his daughter were “incredible”.
Street parties and Red Arrows fly-over planned for four-day VE Day 80th anniversary celebrations
Emily Sergeant
Street parties and fly-pasts by military aircraft including the famous Red Arrows are planned for the 80th anniversary of VE Day.
Victory in Europe (VE Day) – which takes place on 8 May each year, and marks the Allied victory in Europe – resulted in millions celebrating the end of the war in 1945, with street parties, dancing and singing all across the country.
And now, 80 years later, similar events and celebrations are set to take place.
The commemorations set to take place over four days at the start of May will pay tribute to the millions of people across the UK and Commonwealth who served in the Second World War, telling the stories of those who fought, the children who were evacuated, and those who stepped into the essential roles on the Home Front.
On 8 May the nation will come together to mark the 80th anniversary of VE Day
— Department for Culture, Media and Sport (@DCMS) March 5, 2025
The early May bank holiday on Monday 5 May will see the beginning of the events to mark VE Day 80, with events planned including a military procession, flypast of current and historic military aircraft, and the return of the poppies to the Tower of London.
Also on bank holiday Monday is when street parties, barbecues. and community get-togethers are being encouraged to be held by communities across the country to echo the celebrations 80 years ago.
The Government has also issued a nationwide call for families to ‘delve into their lofts’ and discover their own stories from the Second World War.
On actual VE Day itself, on Thursday 8 May, a service will take place at Westminster Abbey that the Government says will be both an ‘act of shared remembrance’ and a ‘celebration’ of the end of the war.
Street parties and a Red Arrows fly-over is planned for 80th anniversary celebrations of VE Day / Credit: Vicki Burton (via Flickr)
All the planned events will conclude with a concert at the historic Horseguards Parade, with more than 10,000 members of the public expected to attend, and well-known stars of stage and screen and military musicians set to perform.
“80 years ago, the freedoms we enjoy today were defended by our remarkable Second World War generation,” commented Defence Secretary John Healey MP as the planned celebrations were announced.
“Our duty today is to safeguard the British values they sacrificed so much to uphold.
“As we mark 80 years since the end of the Second World War, our grateful nation looks forward to joining our brave Armed Forces and veterans to reflect, rejoice and remember.”
Featured Image – Jason Garcia (via Flickr)
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Manchester has been named one of the UK’s top car theft ‘hotspots’
Emily Sergeant
Manchester has unfortunately been named one of the UK’s top car theft ‘hotspots’, according to a new analysis.
In recent months, Greater Manchester has been earning itself some rather impressive new titles, with wins across areas such as property prices, arts and culture, and so much more… but when you win some, it seems like you also lose some.
That’s because a data analysis of car theft statistics across the UK in 2024 has sadly seen Manchester named in the top 10 ‘hotspots’.
Although motor thefts were found to have decreased by 6% in the previous year, there was still a whopping 61,343 cars reported stolen to the Driver and Vehicle Licensing Agency (DVLA) in 2024, which marked the third-highest annual total in the past decade.
The number of car thefts in 2024 was actually more than twice the number recorded in 2015.
Manchester has been named one of the UK’s top car theft ‘hotspots’ / Credit: Wikimedia Commons
Analysis of the data from This is Money and MailOnline, as shared by the RAC, highlighted that East London was the worst affected area in the UK, but Manchester wasn’t too far behind.
Manchester took the third spot on the top 10 list, with a total of 912 cars reported stolen in 2024 alone, while some of the other northern cities on the ranking include Leeds and Sheffield.
It comes as no surprise, however, that at the top of the list is the capital of London, with a shockingly-high 8,145 cars stolen last year.
Top 10 UK car theft ‘hotspots’ 2024
London – 8,145
Birmingham – 3,220
Manchester – 912
Leeds – 901
Sheffield – 899
Coventry – 862
Wolverhampton – 616
Leicester – 533
Walsall – 521
Bristol – 506
According to the analysis, there are several ways that criminals are choosing to steal cars nationwide, with one of the most popular being key cloning, where a thief creates a copy of a car’s key fob or key to gain access to the vehicle.
This technique is particularly common with modern cars that use keyless entry and push-to-start systems, which communicate with the car through radio signals.
Emily Sergeant -
14th January 2022 
