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).
ADVERTISEMENT
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.
ADVERTISEMENT
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.”
ADVERTISEMENT
Amelia’s father, Mike Carroll, said the “amazing” nurses and doctors treating his daughter were “incredible”.
Casemiro is leaving Manchester United at the end of the season
Danny Jones
Manchester United player Casemiro has confirmed that he will be leaving the club when his contract expires at the end of the season.
The veteran CDM and European footballing legend joined Man United back in 2022 for around £70 million from his former team, Real Madrid, where he won everything over the best part of a decade.
Now, Old Trafford fan favourite ‘Cas’ (full name, Carlos Henrique José Francisco Venâncio Casimiro) is set to leave United following the expiration of his current and highly lucrative deal this summer.
Announcing his pending departure in an emotional video, the seasoned Brazilian midfielder admitted that he feels the time is right to leave the club – but not before giving his “everything” in the remainder of the current campaign.
Writing in the caption of the social media post, Casemiro said: “Knowing when stages come to an end. Knowing when to say goodbye when you feel that you will be remembered and respected forever.
“Four months to give my all for this badge and for our goal. Eternal respect and affection for Manchester United and its wonderful fans. Forever Red Devil.”
Responding underneath the partnered post, the club simply wrote: “Once a Red, always a Red.”
Now 33 years old and already being accused of being ‘over the hill’ even when he first landed in Manchester, Casemiro had an impressive first season under Erik ten Hag and quickly became a crucial cog in the squad; arguably, overly relied upon, some would say.
On the other hand, given his age and the fast pace of English football, it’s fair to say he’s done well to keep up with the most competitive league on the planet.
He is also one of the well-paid talents in the Premier League, so while the majority of supporters will be gutted to see him go, the board will still be relieved to see his estimated £350,000-a-week wages taken off the books.
Nevertheless, he is now regularly subbed off around the hour mark for Man United, and it’s not exactly a surprise that he is now preparing to move on. INEOS and their recruitment already look to be searching for reinforcements in the middle of the park.
They are looking to bolster their options as they chase down Champions League qualification
Bringing a wealth of experience and leadership to ten Hag, Ruben Amorim, and now Michael Carrick‘s setup for what’s left of the 2025/26 term, he’s a big presence that will no doubt be missed in the dressing room and on the pitch.
Having scored 21 times in 146 games so far, he will finish the season with more than a century of appearances, and we wouldn’t be surprised if you see him chip in with a few more goals before hanging up his red shirt.
Besides being a serial throughout pretty much the rest of his career, the midfield remains a key point of contention at United, and his departure will no doubt mean more talent will need to be brought in at least by the summer.
You can see more of his farewell announcement video down below.
💬 “I will always carry this club with me. I will always be a Manchester United fan.”
Manchester City are reimbursing fans who travelled to watch their defeat against Bodo/Glimt
Danny Jones
A bunch of Manchester City players are preparing to refund fans who travelled to watch the shock defeat against Bodo/Glimt earlier this week.
In case you missed the surprising score, Man City were on the end of a very unexpected result against the Eliteserien side, losing 3-1 in what was the club’s first-ever win in the Champions League.
More than that, it was also the first time a Norwegian team had won in the competition in nearly two decades, making it a historic night for the nation, albeit one to forget for the Blues.
Following the European upset, as a gesture of goodwill towards supporters, select members of the squad from Pep Guardiola’s so-called leadership group have now pledged to cover the trip made by the dedicated away fans, from the match ticket itself to travel costs.
JUST IN: Manchester City's players are reimbursing fans who watched their Champions League defeat against Bodo/Glimt.
They are covering the cost of match tickets for game which Pep Guardiola's side lost 3-1 🚨
The message from City stars is as follows: “Our supporters mean everything to us. We know the sacrifice that our fans make when they travel across the world to support us home and away, and we will never take it for granted.
“We also recognise that it was a lot of travelling for the fans who supported us in the freezing cold throughout a difficult evening for us on the pitch. Covering the cost of these tickets for the fans who travelled to Bodo is the least we can do.”
Bernardo Silva, Ruben Dias, Rodri and Scandinavian native Erling Haaland, who had a less-than-ideal return to his home country on Tuesday night, are said to be the individuals covering the fees
As per multiple reports, the figure is said to be just under £10k – approximately £9,357 spread across a total of 374 matchgoers, to be specific.
While the club and the players, specifically, have been praised by plenty for what many have labelled as a ‘classy move’, some are suggesting that the statement actually signals the opposite regarding their opponents, who shone on the night.
Scoring twice in quick succession midway through the first half before bagging the third and ultimately decisive goal in the 58th minute, it could have been four or five.
Bodo/Glimt had moments ruled offside and hit the woodwork in both halves.
Despite City pulling one back and showing promise of getting back in the game through Rayan Cherki, that momentum was quickly crushed when the aforementioned and only recently returning, Rodri, was sent off after a second yellow around the hour mark.
Following the arguably equally unexpected blow in the Manchester derby last weekend, it’s been a tough few days for the players and fans alike, but they still stand a chance of beating Arsenal to the Premier League title this season.
You can see the highlights from the Bodo/Glimt vs Man City game here.
Emily Sergeant -
14th January 2022 
