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”.
Beloved plant-based independent street food business Herbivorous is set to close imminently
Danny Jones
We hate writing this, but we have news of yet another local hospitality closure as beloved Manchester-born and pioneering plant-based brand Herbivorous has confirmed they’ll soon be calling it a day.
If you can hear us sighing through the screen, apologies – we’re just getting really fed up of saying farewell to our favourites, so god knows how rubbish those involved feel.
As you can see, the team behind the multi-location vegan street food specialists began by writing: “It’s a long one so stay with me… It seems you can’t open social media at the moment without reading about another hospitality business closing down.
“Throughout 8 years of Herbivorous years we’ve come up against many challenges from Covid 5 years ago to watching all the big vegan brands from London and beyond come to Manchester and largely disappear again to the closure of Hatch our busiest site, but with continually increasing costs its becoming really difficult to maintain a thriving business.”
Herbivorous started out life back in 2016 as a cult hit at the old outdoor food, drink and entertainment hub centring around a ‘container village’, the first of its kind in the city and soon to reopen under new owners and a new name.
Since then, co-founders Robyn and Damian have gone on to expand not just to one permanent site over in Withington but with outposts in Sheffield and York, having gained a strong reputation with stalls and pop-ups all over.
Their hospitality story might not have the ending we personally would hope for, but it’s been a brilliant one for so many foodie fans – us lot included.
Nevertheless, they go on to add in the emotional statement that external pressures such as a recent bereavement and their own ever-growing family have also contributed to the decision which, despite being an understandably hard one, “feel like the right time.”
“We are so incredibly proud of how far we’ve come from spending long days slinging duck wraps from our green vintage horse box at festivals to three Herbi locations across the North of England”, they continue, “and with that we’ve also met so many fantastic people!”
“Whether you worked for us at a few festivals over [the] summer or for years at our restaurant, we just wanted to say and massive thank you! The memories will stay with us forever and, of course, how can we not mention our fabulous customers!
“Thank you all so much for choosing Herbivorous over the years. Those of you who had our food at Festivals and then found us at one of our permanent locations, those of you who came back week after week to Hatch, Spark, Withington and beyond.”
They signed off by detailing their final business days, with their Sheffield Kommune spot having already shut for refurbishment; meanwhile, their spot in SPARK York will be wrapping up on Saturday, 19 April.
As for their flagship brick-and-mortar venue here in Greater Manchester, Herbivorous Withington will be shutting on Friday, 25 April.
Once again, there’s nothing we can say other than thank you for years of delicious food, that we’re guttted to see you go, and that everyone at The Manc Group wishes you the best whatever comes next.
AJ Tracey is playing a VERY intimate gig in Manchester next month
Thomas Melia
London rapper and respected grime artist AJ Tracey is ‘live and direct’ once again, announcing a whole host of UK dates, one of which is a rather intimate gig right here in Manchester.
It’s official: one of UK rap’s leading gents is getting back on the road and he’s showing a ‘Little More Love’ to lots of cities, including Manchester.
In a post on the UK star’s socials, AJ Tracey trades his music persona for that of a sports pundit as he announces the dates for his upcoming tour while impersonating an F1 commentator.
Anyone looking to attend Tracey’s ‘Not Even A Tour’ can catch the star up and down the country on his over 20-date tour with a stop in Manchester as soon as this month.
The rapper has reached phenomenal heights since dropping the unforgettable ‘Ladbroke Grove’ in 2019 and is heading out across the nation to make sure everyone knows about it.
Get ready to spit bars left and right as this rapper’s discography is stacked with serious tunes like ‘Dinner Guest’, ‘West Ten’, ‘Thiago Silva’ and more.
More recently, he collaborated with Walsall’s finest Jorja Smith for a flirty garage beat also known as ‘Crush’ with the video being the two artists talking it out in a good old fashioned caff.
The latest collaboration with Smith marks the start of a new era for Mr. Live and direct as it fell in line with the announcement of his third studio album.
Titled Don’t Die Before You’re Dead, we’re sure he’ll be “building a vibe” wherever he goes and probably previewing a few exclusive tracks from his upcoming project too.
This gig may come as quite a surprise for any hardcore fans of the ‘Ladbroke Grove’ star as the venue in which he’s performing is definitely intimate only, holding just over 250 guests.
This rap giant is bringing his unbelievable beats to none other than the legendary small-cap city centre live music venue, The Deaf Institute, at the end of this month.
It’s safe to say you won’t get many more chances, if any, to see him in such a tight-knit space again.
AJ Tracey is bringing ‘Not Even A Tour’ to Deaf Institute in Manchester on 30 April, with tickets on sale Friday 4 April from 12 noon.