In Washington DC and Gaza two very different families are united by one very rare disease

Published

3 weeks ago

May 5, 2024

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It is a paradox that humanity at its very worst so often also brings out its very best too.

This is a story about the kindness of strangers. It’s a story about hope over hopelessness. It’s about the war in Gaza but also about the rarest of diseases.

It is about two families in worlds far apart. It is a story about two little girls, Julia and Annabel.

I don’t yet know how it will end. But this is how it started.

It was two weeks ago when my phone pinged: a message on Instagram from a friend-of-a-friend. Her name is Nina Frost.

Nina and I first met a few years ago at a party in Washington DC where she had told me about her daughter Annabel, a little girl with an ultra-rare genetic disorder called AHC.

I remember Nina explaining how it was a disease like no other.

‘The human time bomb disease’ she had called it, based on the all-consuming parental nightmare that their little girl could have a fatal seizure at any moment.

I’ve followed Nina’s Instagram, @HopeForAnnabel since we first met.

The good news is that Annabel is doing well, albeit with that eternal danger hanging over her. She requires constant care, attention and love.

Nina’s message to me wasn’t about her own daughter. It was about another little girl, in Gaza.

Rare diseases like AHC, which stands for Alternating Hemiplegia of Childhood, generate tight networks; the families living with the condition. Only about 1,000 people worldwide have been diagnosed with AHC. It really is rare.

“There is a little girl stuck in Gaza with the disease,” Nina wrote to me.

“Julia is three – after the last few months she has become paralyzed and unable to eat as her symptoms have worsened dramatically. We are desperate to help as she is massively vulnerable – literally on the brink of death.”

Nina told me how she and her husband, Simon, are trying to organise the impossible: to get specialist drugs into Gaza and, ultimately, to try to get Julia and her family out.

Nina was modest about an endeavour that I now know has been all-consuming and expensive.

To tell this remarkable story of kindness and hope, I asked Nina to share with me Julia’s father’s number. Our local colleagues in Gaza then tracked the family down to a tent in the southern city of Rafah.

Julia Abu Zaiter is from northern Gaza originally. But with her father Amjad, her mother Maha and her older sister Sham, she was forced south by the Israeli military.

“My girl is three and a half years old. I want her to go out and play with the other children. Now, she cannot move at all,” Julia’s mother told our team, cradling her severely disabled little girl.

Rafah is on Gaza’s southern border with Egypt. Safety is so close and yet beyond reach unless the right strings are pulled with different authorities and governments in a labyrinth of wartime bureaucracy.

The images filmed by our team confirm what Nina had feared in her message to me.

Julia and her family are in the toughest of conditions. The house next to the tent was bombed a few days before our team visited.

The Abu Zaiters are now stuck in the city that could be the next battlefield and with a daughter whose condition is compounded by just the slightest stress, a little girl with, as Nina had told me, the ‘time bomb disease’.

“I told myself ‘it’s over, my girl is gone’,” Julia’s mother told our Gaza team, showing them Julia’s semi-paralysed state.

“Then a man named Simon contacted us and told us he will see if he can help, because his daughter’s situation is similar to mine.”

Five thousand miles away, and a world apart, in a leafy northwest suburb of Washington DC, I am now sitting with Simon, Nina and Annabel.

It is humbling to listen to their words – about their own daughter, but about their fight for a stranger too.

“Annabel lives with the most challenging condition that we can imagine – a neurological degeneration – and she lives with it with a smile on her face,” Simon says. “And we’re imagining the same for Julia in the most dire of circumstances.”

We look at videos of Julia which Amjad has sent to Simon.

“Our kids are all so similar… we feel a sense of connection to so many families and our world of rare disease,” Nina tells me.

“This is like that but on steroids. I mean, we feel so distressed for the situation that they’re facing.”

“Julia’s circumstances are exponentially worse, but I think we’ve always embraced the idea that we can do something to help, we must do something to help and that we should. I mean, I think it’s always been if not us, then who?” Nina adds.

Amjad’s message highlights concerns he has about his daughter. He is looking for reassurance from Simon.

Julia is experiencing some severe paralysis and via a translated SMS and a few photos, Amjad wants some encouragement which Simon can’t give.

“They don’t have the medicines they need and the doctors that they need to really treat and properly prevent episodes and to address them when she has them,” Simon says.

“So we’ve been trying to gather a group that can support her. It’s been constant communication and really difficult with the translation issues,” Simon tells me.

Over in Gaza, Julia’s mum is desperate. “Our conditions due to the war are below zero.

“Our situation is horrible. I cannot provide my daughter with any food or drinks. I can get medications through lots of difficulty, and I tell myself that getting these medications is more important than getting food for us.”

Against the odds, Simon has managed to coordinate with the right people to get the right medication into Gaza for Julia.

Through the tight AHC network, one doctor has prompted another who knows another and another. That’s how this works. Threads of kindness stitched together.

Now the challenge is getting Julia out to Egypt and then on a medical flight to Abu Dhabi. It will be hard, maybe impossible.

“And it seems like she’s really declined,” Nina says looking at the latest videos of Julia.

“I mean, it seems like exactly what we would have predicted has happened. She has gone from being a happy three-year-old with a profoundly difficult disease to being this shell of herself.”

“I feel like I am losing her,” Maha says with Julia in her arms. “She is dying right next to me and I cannot even do anything. The thing I fear the most is losing my daughter.”

There is some chance of an extraction to safety soon. It is not guaranteed but it is some hope for one little girl in a place where uncertainty is all around.

This is a story about two families worlds apart but bound by a disease.

I don’t yet know how it will end. This may feel sometimes like a world of hopelessness, but I have some hope.

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Morgan Spurlock: Super Size Me documentary maker, who ate only McDonald’s for a month, dies aged 53

Published

3 hours ago

May 24, 2024

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Morgan Spurlock: Super Size Me documentary maker, who ate only McDonald's for a month, dies aged 53

Documentary maker Morgan Spurlock, who famously ate only at McDonald’s for a month in Super Size Me, has died.

Spurlock died from complications of cancer at the age of 53 in New York, his family confirmed in a statement.

Craig Spurlock, the filmmaker’s brother, said: “Morgan gave so much through his art, ideas, and generosity.

“The world has lost a true creative genius and a special man. I am so proud to have worked together with him.”

Born on 7 November 1970, Spurlock started off his career as a playwright before creating I Bet You Will – an internet series where members of the public would take part in stunts for cash.

The 2002 webcasts, which saw some dared to eat a full jar of mayonnaise for $235 or take a shot of cod liver oil, were eventually bought by MTV.

Spurlock rose to fame with his 2004 documentary Super Size Me, where he exclusively ate at McDonald’s for 30 days to investigate the rise of obesity in the US.

He ate an average of 5,000 calories a day, always took a “super-size” meal if offered and exercised less to match the average American’s physical activity at the time.

By the end of his experiment, he claimed he put on 25lbs (11.3kg) and started suffering from depression and liver dysfunction.

Spurlock’s documentary grossed $22million in the global box office and was nominated for an Oscar.

It also prompted McDonald’s to stop offering its “super-size” option in 2004.

However the film’s findings were called into question as Spurlock refused to share his meal logs. He also later admitted to alcohol abuse in 2017, which other documentary makers said explained his liver issues and poor mental health.

In 2019, Spurlock released his second expose against the fast-food industry with Super Size Me 2: Holy Chicken!

The documentary sees him open his own restaurant and “become part of the problem” while tackling claims of healthy meals at big chain restaurants.

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Scottie Scheffler arrest officer disciplined for not having bodycam turned on

Published

7 hours ago

May 24, 2024

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Scottie Scheffler arrest officer disciplined for not having bodycam turned on

A police officer who arrested world number one golfer Scottie Scheffler has been disciplined for not having his bodycam on during the incident.

Scheffler was dramatically detained ahead of the second round of the PGA Championship last Friday in Louisville, Kentucky, after he reportedly tried to drive around a traffic jam outside Valhalla golf club caused by a fatal accident.

The 27-year-old later said he was “rattled” by the experience, which saw him charged and a police mugshot released of him wearing an orange jail-issue jumpsuit.

Louisville Detective Bryan Gillis has now been subject to “corrective action” for failing to activate his body-worn camera during the pre-dawn encounter in which he claimed he was “dragged/knocked down by the driver”.

Police have already released a video from a street camera that appears to show Scheffler’s car turning into the golf club entrance, prompting an officer to run toward the vehicle and apparently strike it as it comes to a stop.

The camera is too far away to capture the full details of the incident.

Another video released by authorities from a police vehicle dashcam shows Scheffler in handcuffs as he is taken away by officers.

Scheffler was arrested on charges that he injured Gillis and disobeyed commands, but the golfer said “he never intended to disregard any of the instructions” and that the incident was caused by a “big misunderstanding”.

Scheffler’s attorney Steve Romines has said his client was not at fault.

“Our position is the same as it was last Friday, Scottie Scheffler didn’t do anything wrong, we’re not interested in settling the case,” Mr Romines said.

“We’ll either try it or it will be dismissed.”

The city’s police chief pointed out officers are expected to maintain their body-worn cameras in a “constant state of operational readiness”.

Jacquelyn Gwinn-Villaroel, head of the Louisville Metro Police Department, said: “Detective Gillis should have turned on his body-worn camera but did not.

“His failure to do so is a violation of LMPD policy on uniforms and equipment.”

An internal investigation report said Detective Gillis should have at least had his camera on in standby mode while directing traffic before the incident with Scheffler.

Chief Gwinn-Villaroel said the officer had “received corrective action” for the breach.

He had to complete a “failure to record” form as required by policy, was “counselled by a member of his command” and a “performance observation” was completed.

Detective Gillis had said he was requested to respond to a fatal accident at Valhalla when he saw Scheffler’s vehicle “travelling in the opposing lanes coming at me.”

Gillis, who approached Scheffler’s car on foot, wrote in an arrest report that the driver “refused to comply and accelerated forward, dragging” him to the ground.

He said his uniform trousers were damaged in the fall and he was taken to the hospital for his injuries.

Just hours later, after being carted off in handcuffs and a spell in jail, Scheffler returned to the golf course and eventually finished the tournament tied in eighth place on Sunday, which was enough to secure prize money of about $520,000 (£409,000).

He is due to return to Louisville on 3 June to face four charges, including second-degree felony assault of a police officer.

Louisville police’s current body camera policy was introduced following controversy in 2020 after officers shot Breonna Taylor, a 26-year-old Black woman who was killed during a botched drug raid.

At the time, the plain-clothes officers who served the warrant and fired at Taylor were not required to wear body cameras.

The new policy required all officers to turn on the camera “prior to engaging in all law enforcement activities and encounters.”

The police chief at the time of Taylor’s death was later fired when officers at the scene of another fatal shooting failed to turn on their body-worn cameras.

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Sean Kingston’s home raided ‘over $150,000 TV payment’ – as his mother arrested

Published

8 hours ago

May 24, 2024

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Sean Kingston's home raided 'over 0,000 TV payment' - as his mother arrested

A SWAT team has raided the rented Florida mansion of singer Sean Kingston and arrested his mother on fraud and theft linked to the installation of a gigantic TV.

Detectives detained his mother, Janice Turner, 61, at the property in a Fort Lauderdale suburb, popular with celebrities and professional athletes, including Dwayne Johnson and Miami Dolphins star Tyreek Hill, on Thursday.

The sheriff’s office said the investigation is ongoing and declined to release specific details about the charges against Turner or whether her 34-year-old son is also being sought.

Local media reported Kingston was out of town and was not present during the raid, in which items were removed and loaded into a van by the authorities.

The Jamaican-American performer is best known for his 2007 single Beautiful Girls, Fire Burning and his collaboration with Justin Bieber on Eenie Meenie.

Federal court records show his mother pleaded guilty in 2006 to bank fraud for stealing more than $160,000 (£126,088) and served nearly a year and a half in prison.

Kingston wrote in an Instagram post on Thursday, which was later removed: “People love negative energy!

“I am good, and so is my mother!… My lawyers are handling everything as we speak.”

Robert Rosenblatt, a lawyer representing the rapper and his mother, told the South Florida Sun Sentinel: “These are fine people, and I’d be surprised if the allegations were true.”

Florida Department of Corrections records show Kingston is on two-year probation for trafficking stolen property.

‘Promise of commercials with Justin Bieber’

Lawyer Dennis Card, who was present at the arrest, said it is partly related to a lawsuit he filed against Kingston in February, accusing him of defrauding a Florida company that installed a 232-inch television.

In the case, Ver Ver Entertainment says Kingston contacted the company in September about buying the television, sold under the brand name Colossal TV, and having it installed at his home. The system costs $150,000 (£118,000).

Kingston allegedly told the owners that if they agreed to a lower down payment and gave him credit, he and Bieber would do commercials for them.

In November, Kingston paid the company $30,000 (£23,631) and the TV was installed, according to the lawsuit, but no commercials or further payments were made.