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”.
Manchester United star Antony accused of domestic violence by ex-girlfriend
Danny Jones
Manchester United winger Antony dos Santos has been accused of domestic violence by his ex-girlfriend in Brazil.
The 23-year-old has been hit with multiple allegations of assault, bodily injury and threatening behaviour by Antony, including one incident which is reported to have required surgery.
As per ESPN Brasil, a police report was filed against the United star by his ex-partner Gabriela Cavallin on Monday, which listed a total of four different incidents beginning in July 2022.
The DJ and influencer alleged that the first instance of abuse happened after the pair broke up at a party, with Antony apparently pulling her by the arm and by her hair before pushing her into a car. Cavallin was also estimated to be about 17 weeks pregnant at the time, though this wasn’t cited in the incident report.
ESPN Brasil:
Timeline of the reported aggressions from Antony towards his former girlfriend:
July 2022: Antony pulled her out of a party, grabbing her arm and hair. He then pushed her into his car. She was 17 weeks pregnant at the time.
As the report goes on to detail, Cavallin sadly lost the child and while she does not attribute the miscarriage to the domestic violence, she claims that Antony continued to abuse her physically and emotionally up until as recently as May this year, having got back together with him for a time.
Other instances of abuse are said to include Cavallin being attacked in her own apartment in January (citing “reasons of jealousy”), which reportedly caused the displacement of her silicone implants and required surgery, as well as two more attacks — one of which was apparently witnessed by a friend and Antony’s mother.
The 22-year-old also mentioned that she was left with a cut on her finger by a glass broken by Antony — photos of the scar being attached to the police report — adding that he assaulted her again later that day and broke her phone “so she would not call for help”. She claims she only managed to leave five hours later after the Brazilian international’s physiotherapist took her to the doctor.
While an initial report by globo.com suggested that the fourth and final alleged attack took place on 20 May when Antony had already travelled with his club teammates for their game against Bournemouth, it has since been clarified that the abuse and threatening behaviour took place over the phone.
Manchester United winger Antony has been accused of assault by his ex-partner Gabriela Cavallin with a police report being filed against the Brazilian.
She alleges that Antony assaulted her on May 20th. The report is said to include photographs of abrasions and threatening… pic.twitter.com/ShAzuhwOHm
Cavallin claims Antony threatened her during a call on 20 May, warning that “if he saw her with someone, he would kill her”; she also noted several instances when the player had threatened to “kill himself” after they fought in the past.
She claims the two haven’t spoken since 28 May.
Brazilian police are now said to be investigating Cavallin’s claims after she presented photographs of multiple injuries supposedly sustained by the footballer and also requested “urgent protective measures” against him. There is no indication whether British authorities are currently involved.
The details of the case are yet to be fully verified and neither the player nor his club have issued a statement at this time.
Police confirm body of man, 31, who disappeared after leaving Stockport pub has been found
Emily Sergeant
The body of a man who vanished after leaving a pub in Stockport on Sunday night has now been found, it has been confirmed.
31-year-old Christopher Barlow was reported to Greater Manchester Police (GMP) as missing after he was last been seen leaving the Royal Oak pub in the Mellor area of Stockport at 1:17am on Sunday 4 June.
He was seen turning left onto Brabyns Brow from Town Street, but there were no further sightings of him after that.
Police said they were becoming “increasingly concerned” about Christopher’s whereabouts.
But now, after officers and specialist teams searched a specific area in Marple, GMP confirmed last night that a body had been found.
Greater Manchester Police can confirm that sadly a body has been found after officers and specialist teams searched a specific area in Marple, Stockport in relation to Christopher Barlow being reported missing.https://t.co/JD44kXP0AVpic.twitter.com/safIQ1CUmy
— Greater Manchester Police (@gmpolice) June 6, 2023
Sadly, police have confirmed this to be Christopher’s body.
GMP confirmed that Christopher’s family have been informed following the recovery of the body, and a report is now being prepared for the Coroner’s Office.
In a statement addressing and confirming the devastating news last night, Detective Superintendent Helen Critchley, of GMP’s Stockport district, said: “Firstly, our thoughts are with Chris’s family and friends at this very distressing time.