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”.
Swinton women’s Lionesses rebrand is officially off the ground
Danny Jones
Following an initial announcement late last year, local rugby club Swinton Lions’ women’s team has finally and fully rebranded as Manchester Swinton Lionesses.
The Salford-founded rugby league club, whose men’s team competes in the RFL Championship, has a long and rich competitive history, as well as a fervent male and female following in the area.
As one of the most important and well-established outfits in women’s rugby, Swinton Lions have not only officially relaunched as the Lionesses from 2026 onwards, but are looking to re-establish themselves as their own entity and a competitive powerhouse capable of competing at the top level.
In case you hadn’t heard about the rebrand up until now, you can get a closer look at changes not only to the name but the club crest and more.
As you can see, not only is the shift towards Manchester rather than just strictly Swinton a concerted effort to broaden the supporter base across all 10 boroughs, but there are some key tweaks to the new Lionesses badge.
Changing the design of the lion logo itself – as well as citing 2020 as a key date in this rebirth (i.e. the short-lived push to be renamed the ‘Manchester Lions’), which is more than half a decade in the making – they’re heading into the new year with both a new name and a slightly new look.
Just as reported by the likes of sports journalist Johnny Davidson back in November, however, the title and insignia have been a long time coming.
As per a press release by the club at the time, besides new kits and some key admin, “This evolution is about more than a new name or logo; it’s about creating a platform for women and girls across Greater Manchester to be inspired, to belong, and to believe they can achieve greatness in our sport.”
They insist that the aim is to be a “progressive club that’s proud of its history but unafraid to innovate”, also looking to attract new investors and commercial partners – such as Superfly Sports Flags, which will now appear on the likes of players’ shorts and boot bags, as well as around Heywood Road.
'The Swinton Lionesses today proudly announced the launch of their new identity – the Manchester Swinton Lionesses – marking an exciting new chapter not only for women’s rugby league but for the evolution and ambition of one of the sport’s most historic clubs.
Women’s captain Sammi Simpson went on to state: “We’re so proud of what this team has achieved in such a short time, and this next step feels like a natural evolution.
“Wearing ‘Manchester Swinton Lionesses’ on our shirts will remind us of where we’ve come from — and how far we can go together. We want to inspire the next generation of players, supporters, and families to be part of something special.”
Even Mayor Andy Burnham has expressed his excitement, adding: “Manchester is a city built on sport, strength, and community — and the Manchester Swinton Lionesses embody all of that.
“This new identity is a powerful statement about where women’s rugby league is heading and the role Greater Manchester will play in shaping that future.”
As any rugby fan will know, this isn’t the only rebirth of a local sporting institution currently taking place over in Salford.
New landmark chickenpox vaccine begins UK rollout to protect thousands of children
Emily Sergeant
A new landmark chickenpox vaccine is beginning its rollout across the UK in a bid to help protect hundreds of thousands of children.
Chickenpox is a common infection in children that spreads easily.
It is usually mild but it can lead to serious complications which need hospitalisation, including chest infections and fits. The latest Government data indicates that half of children will contract chickenpox by the age of four, and 90% by the age of 10.
Currently, children who catch chickenpox are typically advised to stay off school until all spots have formed a scab – which is usually five days after the spots appear.
But now, this new vaccine will mean children can miss fewer days in nursery or school, and reduce time parents need to take off work to care for them.
Hundreds of thousands of young children are now being offered the chickenpox protection as part of routine NHS childhood vaccinations.
The combined vaccine adds chickenpox protection to the existing measles, mumps and rubella schedule.
Surprisingly, it’s estimated that around £24 million is lost in income and productivity every year in the UK due to childhood chickenpox, so not only will the new vaccine rollout save money this way, but it is also expected to save the NHS a whopping £15 million a year in costs for treating the common condition.
The new vaccine comes following a recommendation from the Joint Committee on Vaccination and Immunisations – with a combined MMRV vaccine replacing the MMR vaccine to protect against measles, mumps, rubella, and chickenpox (varicella).
From now on, GP practices on the NHS will start to offer children the combined MMRV vaccine at 12 months and 18 months of age.
Dr Claire Fuller, who is the National Medical Director for NHS England, called the rollout a ‘hugely positive moment’ for children and their families.
“From now, the combined vaccine to protect against measles, mumps, rubella and chickenpox will be available at children’s routine vaccination appointments to keep children healthier and prevent sickness from these highly contagious viruses,” commented Dr Fuller.
“The new vaccine will also help the health service move its focus from sickness to prevention, and keep more children safe and in school.”
Featured Image – Jonny McCullagh (via Wikimedia Commons)
Emily Sergeant -
14th January 2022 
