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Cambridgeshire: Girl, 9, not Batten disease hold her back from dreams
Published
6 days agoon
By
Louie Leach
A terminally ill young girl has made her dreams come true after meeting heroes like Harry Kane and Leah Williamson.
Caitlin Passey, 9, is a keen footballer who plays on a team in her village of Over, Cambridgeshire.
The teen uses a special ball with attached bells – nicknamed “jangles” – so she can join in.
That’s because Caitlin has very limited vision and needs to make the most of her other senses to zip around the field.
Her parents noticed something was wrong during lockdown after she started bumping into things around her house.
After several tests, they found out that she had the extremely rare batten disease
Caitlin was told she would develop childhood dementia and would be confined to a wheelchair by age 15.
Doctors told her parents that the experiences from this period of her life will be the last long-term memories she holds on to.
As a result, her family has spent their life savings, switched jobs, and traveled the world to make the most of the remaining time.
A high point for Caitlin came when she was called “mini-me” during a brief encounter with her favorite player.
said Caitlin Reported Medias.co.uk: “It was great to meet the Lionesses after watching them train, especially my heroine Leah Williamson as it was great to see them win for our country.
“She’s a defender like me and plays really well and captains the England team.
“My dad also told me that she also has health issues, which inspires me even more because she doesn’t let that stop her.
“I also loved meeting the Spurs team when I was a mascot and going out holding hands with my other hero, Harry Kane.
“I just wish I could spend more time with all of them. It was also really cool to meet Ed Sheeran because it was just him and our family, I want to be friends with all of them.
Caitlin grew up in an athletic family, her brother and father were avid football fans.
She began playing with her friend Lily at the age of five, but her parents soon recognized the need for a dedicated girls’ team.
Caitlin’s father, Nick, started a team in Over so the girls could have a chance to play, and they have since been joined by a long list of would-be lionesses.
Caitlin says her friends are very understanding and patient when it comes to making sure she can enjoy the workout to the fullest.
She added: “I’m just trying my best. Since my eyes don’t work very well, I play with a bell ball that I can hear when it moves. Sometimes I’m a bit confused with all the noise and fast paced game which can upset me but I’m just trying my best.
“It would be nice if the parents were quieter. I would also love for my teammates to play blindfolded for some time so they can understand it better.
Family friends have pulled out all the stops to support the family since the nine-year-old was diagnosed.
A friend of Nick’s managed to get hold of Daniel Radliffe, who sent Caitlin a video message.
The actor explained what he looked like and what he was wearing to the Harry Potter superfan in his special message.
It’s a pleasure to meet you and teach us all how to be strong! Hope to see you soon, mini-me!â ¤ï¸
— Leah Williamson (@leahcwilliamson) September 2, 2022
Across Cambridgeshire and beyond, Caitlin inspires others and raises awareness of Batten’s disease.
In Over, the local council is working on ways to make places more accessible, for example by changing the color of areas in parks to make them suitable for people with visual impairments.
Currently, the family is working hard to remodel their home to be comfortable to live in as Caitlin’s condition worsens.
Building an elevator and creating more space is key.
Her fundraising campaign is called “SafeHaven4Caitlin” and aims to protect both her body and her mind in the remaining time.
After Covid restrictions eased, Caitlin and her family also enjoyed trips abroad for special holidays and to meet Ed Sheeran. They also hope for many more special experiences.
Caitlin’s mum and dad, Nick and Naomi, said it was “impossible” to express how proud they are of the boy.
said Reported Medias.co.uk: “She is quite simply the bravest and most determined little girl we have ever met. She faces all her challenges without fear and just gets on with life. We are in awe of her.
“We were fortunate to get some positive moments out of the worst possible situation.
“Those memories will live with us forever, making these tough times a little bit more bearable.”
Time is running out to remodel the family home while Caitlin stays.
Nick and Naomi added: “As Caitlin’s parents, we are so incredibly grateful for the kindness and support we have received from countless strangers and businesses, it is very humbling and makes you realize that there is definitely good in the world.
‘It is [the fundraiser] has gone quite well so far, much better than we could have imagined but it has definitely plateaued and we are still a long way from our goal as time is definitely against us.’
For Caitlin, there’s nothing she wants more than to spend more time with her idols — and help foster understanding.
She added: “I’d love to spend more time with Leah Williamson and Harry Kane, but I’m most desperate to meet Daniel Radcliffe because I really love Harry Potter.
“I want to thank everyone for helping me. It makes me feel special and I wish people would take more time to understand that sometimes people with needs need a little more time.”
You can donate to Caitlin’s fundraiser by clicking here or scan the QR code at the bottom of this article.
Caitlin’s Bucket List
Please contact us if you can help the Passey family achieve any of these goals, or Contact the SafeHaven4Caitlin Facebook page.
- Meet the Harry Potter cast, especially Daniel Radcliffe
- See and meet Katy Perry live in concert
- Meet Harry Kane and Leah Williamson and spend some time with them
- Have better eyes and just be “normal”
- Meet the Ninja Kidz
- Visit Italy
- You have your own bedroom with double bed, TV and Harry Potter themed decorations
- Go on vacation with your best friends
- Have one of their stories published in a book
- Take a cruise vacation like the Ninja Kidz
- Go to Disneyland California like the Ninja Kidz
- Go on a skiing holiday
- A cave like the ones they make on Dengineers
- Visit Lapland
What is Batten disease?
Batten disease – also known as neuronal ceroid lipofuscinosis (NCL) – is the name for a group of inherited disorders of the nervous system which usually begin in childhood.
They interfere with a cell’s ability to recycle a cellular debris called lipofuscin.
Batten is the term commonly used to describe the many forms of the disease formally known as neuronal ceroid lipofuscinosis.
Symptoms generally include:
- Progressive vision loss leading to blindness
- seizures
- movement disorder
- dementia
Developmental skills such as standing, walking, and speaking may not be achieved or may be gradually lost.
Other symptoms that get worse over time include learning difficulties, poor concentration, and progressive loss of speech and language skills.
Most children become bedridden and unable to communicate.
The Batten Disease Family Association is a charity dedicated to enabling all people affected by the condition to live their lives to the fullest and secure the care and support they need until we find a cure have found.
You can read more about Caitlins story on the charity’s website by clicking here
Get in touch with our messaging team by emailing us at [email protected] Medias.co.uk.
For more stories like this, Visit our news page.
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Man who stabbed his sleeping boyfriend to death jailed for life
Published
29 mins agoon
March 24, 2023By
Louie Leach
A killer who stabbed his lover after a sex chat argument and left him to die alone has been sentenced to life in prison.
“Obsessed and jealous” Aaron Ray, 21, stabbed Jason Brockbanks, 24, in September as he slept after seeing Grindr messages on his phone.
The killer, who had previously slit the cockatiel’s throat for his family, left Mr Brockbanks to bleed to death in his bathroom at Mansion Tyne in Newcastle.
It was three days before the body of the Northumbria University student was discovered.
Newcastle Crown Court heard he could have survived had medical help been sought.
Ray, from Sunderland, denied murder but was convicted by a jury after a trial.
Mr Justice Spencer sentenced Ray to life behind bars and said he must serve a minimum of 22 years.
The judge said the evidence showed Ray had been “violent” in previous relationships and said he was “cheating, dishonest and when drunk very dangerous”.
The two men had been enjoying a night out together at Newcastle’s Pink Triangle before Ray saw the Grindr news on Mr Brockbank’s phone.
The judge said it was likely Mr Brockbanks fell asleep, after which Ray recorded video of himself scribbling through the phone, retrieving a knife from the communal kitchen and launching the fatal attack.
Mr Brockbanks was cut across the back before being stabbed in the side while lying in bed under his covers.
Judge Spencer told Ray: “I think when he was attacked Jason was asleep under his covers, defenseless and unable to defend himself against your attack.
“You have shown no remorse for your actions. You didn’t call 911 to help Jason.
“He was bleeding profusely from the wounds, blood dripping through his comforter and sheet. He fell to the ground next to his bed, the covers falling to the floor, covering his phone. That’s why I don’t think he called for help himself.
“He tried to get up, found his way to the bathroom, collapsed in the shower stall and bled to death.”
After the stabbing, Ray took the knife he used in the killing back to the communal kitchen and then left the shelter.
Three days later, on September 27, the manager of the university’s hall of residence received an email asking if she could check on Mr Brockbanks’ well-being because his parents were concerned.
She entered his room and found him “obviously dead.”
Mr Brockbanks’ father, Chris, said his son “hated violence” and had a “great passion for life”.
He said: “Knowing that Jason died slowly and alone will haunt us for the rest of our lives.
“It is truly heartbreaking for us to hear that his death may have been preventable if help was sought.
“We believe Jason spent his final moments looking for his mobile phone to call for help but he was unable to locate the phone as the defendant was the last person to use it.
“I will never understand how a human being could walk away from Jason who is so cruelly and callously injured in his room.”
Prosecutor David Lamb KC had told the court that the Grindr messages on Mr Brockbank’s phone were the “trigger and motivating factor” for the murder.
A post-mortem found Mr Brockbanks had a stab wound to his right abdomen, which was fatal, and two knife wounds to his back.
Get in touch with our messaging team by emailing us at [email protected] Medias.co.uk.
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Latest News
NYC: Cop rappels down skyscraper to arrest FBI fugitive threatening to jump
Published
2 hours agoon
March 24, 2023By
Louie Leach
New Yorkers watched in horror Wednesday morning as a man threatened to jump in front of a broken window of a Midtown skyscraper.
NYPD officers rushed to the scene around 8:30 a.m. Wednesday, when bystanders reported a man hanging from the 31st-floor window of CitySpire, a 72-story skyscraper on 56th Street.
The man was identified as Ian Mitchell, 35, and was served with an arrest warrant by FBI agents. He was wanted by the agency on white-collar crime charges.
“They responded there and found the man in a crisis,” New York City Police Department Chief Jeffrey Maddrey said. “He was wanted there by another agency and instead of going peacefully with that agency, he considered taking his own life.”
The standoff lasted about eight hours on Wednesday as negotiators tried to lure the man off the ledge.
Just before 5 p.m., the NYPD Emergency Services Unit made the decision to rescue the man. A group of officers entered the apartment while another officer abseiled from the 32nd floor.
The rappelling officer was later identified as Detective James Tobin. After Tobin blocked the window frame, another officer at the Mitchell apartment snapped his way back into the building.
The entire encounter only lasted about a minute. Video footage was later released by NYPD Commissioner Keechant Sewell.
“You all saw the video and witnessed the tremendous bravery of Detective Tobin, who climbed out of a 32nd floor window in Midtown Manhattan to push this man back in the window for the rest of the team to grab him and bring him to safety Chief Maddrey said at a news conference later that evening. “What they did today was beyond brave. All New Yorkers should applaud their bravery.”
Mitchell was then escorted to an ambulance and taken to Bellevue Hospital, where he will undergo a psychiatric evaluation.
It’s not clear why the FBI investigated Mitchell. However, he was previously indicted in 2019 for allegedly posing as an investment banker to defraud investors out of over $100,000 New York Post.
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NFL: Hockey team refuse to wear Pride jerseys due to Russian law
Published
4 hours agoon
March 24, 2023By
Louie Leach
A professional ice hockey team decided not to wear Pride jerseys because one of their players is Russian.
The Chicago Blackhawks will not wear their Pride Night commemoration pre-match jerseys on Sunday as a Russian law expands restrictions on activities deemed to promote LGBTQ rights.
Russian President Vladimir Putin signed legislation in December significantly tightening restrictions on activities seen as promoting LGBTQ rights in the country. It builds on a 2013 law and bans advertising, media and theatrical productions deemed “propaganda for non-traditional sexual relations”.
There are safety concerns about wearing the Pride jersey in the game against the Vancouver Canucks.
Blackhawks defender Nikita Zaitsev hails from Moscow.
The National Hockey League and Dan Milstein, who represents teams like the Blackhawks, declined to comment.
But Blackhawks coach Luke Richardson said he and the players are disappointed.
“It’s an unfortunate situation, but that’s what we have to deal with,” Richardson said.
“I don’t think we can control world problems, so it takes that out of our hands. We’re just making decisions as best we can as an organization and for everyone.’
The Blackhawks have previously worn Pride pre-match jerseys. The team has other programs planned to honor the pride. LGBTQ DJs will be DJing before the game and the Chicago Gay Men’s Chorus will sing during an intermission.
“We don’t want the shirts to represent the whole night,” said Blackhawks defenseman Seth Jones.
“We still do a lot for the LGBTQ community and we as players respect that. We just thought this was the best thing for our team. We know the organization puts the players first.’
Russian players from other teams have already opted to wear Pride jerseys, including Nikolai Knyzhov and Alexander Barabanov, who play for the San Jose Sharks.
Pride Nights are coming up for the Canucks and Buffalo Sabers. The Canucks have yet to announce their plans and the Sabers are still in talks about it.
Get in touch with our messaging team by emailing us at [email protected] Medias.co.uk.
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