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”.
Full list of road closures set to be in place for Manchester Day 2024
Emily Sergeant
Manchester Day is back for 2024 this weekend, and the full list of road closures set to be in place has been confirmed.
Now that schools are officially out across Greater Manchester, and the summer holidays are well and truly here, the hugely-popular Manchester Day is making a return once again this Saturday 27 July, and as always, it’s set to be “the day summer officially starts” in the city centre – with a massive celebration of “all things Mancunian” on the cards.
The theme of this year’s annual event is ‘Let The Games Begin’, and it’s inspired by the international summer of sport, just 2024 Olympics kicks off over in Paris.
The day will be packed full of free events and activities to get involved with.
Some city centre roads will be closed on Friday 26 and Saturday 27 July for Manchester Day.
These will include:
🛣️Deansgate 🛣️St Ann Street 🛣️St Mary’s Gate 🛣️Market Street 🛣️King Street
— Manchester City Council (@ManCityCouncil) July 21, 2024
But of course, in order for the all the fun to go ahead as safely as possible, and as tends to be the case for events like these, Manchester City Council says it will need to make some temporary road closures to facilitate it.
The full list of road closures has now been confirmed by the Council, and there’s some major city centre thoroughfares set to be out of action.
Here’s everything you need to know.
Manchester Day is back for 2024 to celebrate the international summer of sport / Credit: Manchester City Council
Manchester Day 2024 – Road Closures
Saturday 27 July
From 6am to 11:59pm, Manchester City Council has confirmed that the following roads will be closed:
Deansgate (Manchester Cathedral to John Dalton Street) – access will be maintained to Marks and Spencer’s car park and Number One Deansgate.
St Ann Street (Deansgate to Cross Street)
St Mary’s Gate (Exchange Street to Deansgate)
St Mary’s Street (Southbridge Street to Deansgate)
Market Street (Exchange Street to Cross Street)
Fennel Street (Corporation Street to Cathedral Street) – access will be maintained for morning deliveries only.
Cathedral Street (Fennel Street to Exchange Square) – access will be maintained for morning deliveries only.
Cateaton Street (Exchange Square to Deansgate)
Barton Square (St Ann’s Square to St Ann Street)
King Street (Cross Street to Deansgate) – no access for deliveries.
All accessible bays, bus lanes, and taxi ranks within the closed areas will also be suspended during from 6pm on Friday 26 July to 11:59pm on Saturday 27 July.
The parking suspensions set to be in place are:
Deansgate (Manchester Cathedral to John Dalton Street)
St Ann Street – including the bays outside St Ann’s Church (Deansgate to Cross Street)
St Mary’s Gate (Exchange Street to Deansgate)
St Mary’s Street (Southbridge Street to Deansgate)
Southgate (St Mary’s Street to King Street West)
Market Street (Exchange Street to Cross Street)
Fennel Street (Corporation Street to Cathedral Street) – access will be maintained for morning deliveries only.
Cathedral Street (Fennel Street to Exchange Square) – access will be maintained for morning deliveries only.
Cateaton Street (Exchange Square to Deansgate)
Victoria Street (Cathedral Approach to Deansgate)
Todd Street (Corporation Street to Station Approach)
King Street (Spring Gardens to Southgate)
South King Street (Ridgefield to Deansgate)
Barton Square (St Ann’s Square to St Ann Street)
King Street West (Deansgate to St Mary’s Parsonage)
St James’s Square (John Dalton Street to South King Street)
Cross Street (King Street to Corporation Street)
Museum Street (Peter Street to Windmill Street)
Marsden Street (Cheapside to Brown Street)
Manchester Day 2024: Let The Games Begin! will take over the city centre on Saturday 27 July from 12pm-6pm.
Check out everything you need to know ahead of the event here.
‘Complex’ Metrolink repairs to the Rochdale via Oldham line could take weeks to complete
Emily Sergeant
Work currently underway on the Rochdale via Oldham line is expected to take several weeks to complete.
Transport for Greater Manchester (TfGM) has confirmed that land movement affecting the Metrolink network near Derker has now “slowed”, and this means that detailed ground investigations and temporary repair works have been able to get underway.
In order for trams to run again on the crucial line from the city centre to the two major Greater Manchester towns, TfGM says that a small section of track has to be moved back – also known as ‘slewed’ – into its original position.
The overhead line poles also need to be repaired too, the transport operator revealed.
Rochdale line update
Land movement affecting the Metrolink network near Derker has slowed, enabling detailed ground investigations and temporary repair works to get underway.
To get trams running again, a small section of track has to be moved back into its original position… pic.twitter.com/byERjitdi1
Unfortunately though, due to the “complex” nature of these works, and despite the fact that TfGM says it’s actively looking to “accelerate” the repairs, the project is expected to take up to five weeks to complete in full.
On top of this, the detailed ground investigations will also establish whether any further work to strengthen foundations beneath the track will be needed at a later date.
TfGM has apologised for the inconvenience caused to passengers.
‘Complex’ Metrolink repairs to the Rochdale via Oldham line could take weeks to complete / Credit: TfGM
Speaking on the scale of works currently underway, and how long he expects them to continue for, Pete Sommers, who is TfGM’s Network Director for Metrolink, said: “I’m sorry for the impact this is having, and will continue to have, on people’s journeys.
“We are working to get trams running through the area again, but this remains a complex and challenging issue and it could still be a few weeks before this happens.
“We will of course keep passengers updated, and I’d encourage people to check our social media channels and website for the latest information and advice.”