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

Published

1 year 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.

US

Donald Trump sending ‘top of the line’ weapons to support NATO in Ukraine war

Published

19 hours ago

July 15, 2025

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Donald Trump sending 'top of the line' weapons to support NATO in Ukraine war

Donald Trump has agreed to send “top of the line weapons” to NATO to support Ukraine – and threatened Russia with “severe” tariffs if it doesn’t agree to end the war.

Speaking with NATO secretary-general Mark Rutte during a meeting at the White House, the US president said: “We’ve made a deal today where we are going to be sending them weapons, and they’re going to be paying for them.

“This is billions of dollars worth of military equipment which is going to be purchased from the United States, going to NATO, and that’s going to be quickly distributed to the battlefield.”

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Weapons being sent include surface-to-air Patriot missile systems and batteries, which Ukraine has asked for to defend itself from Russian air strikes.

Mr Trump also said he was “very unhappy” with Russia, and threatened “severe tariffs” of “about 100%” if there isn’t a deal to end the war in Ukraine within 50 days.

The White House added that the US would put “secondary sanctions” on countries that buy oil from Russia if an agreement was not reached.

Later on Monday, Ukrainian leader Volodymyr Zelenskyy thanked Mr Trump and said he was “grateful” for the US president’s “readiness to help protect our people’s lives”.

After criticising Vladimir Putin’s “desire to drag it out”, he said he appreciated “preparing a new decision on Patriots for Ukraine” – and added Kyiv is “working on major defence agreements with America”.

It comes after weeks of frustration from Mr Trump over Mr Putin’s refusal to agree to an end to the conflict, with the Russian leader telling the US president he would “not back down” from Moscow’s goals in Ukraine at the start of the month.

During the briefing on Monday, Mr Trump said he had held calls with Mr Putin where he would think “that was a nice phone call”, but then “missiles are launched into Kyiv or some other city, and that happens three or four times”.

“I don’t want to say he’s an assassin, but he’s a tough guy,” he added.

Earlier this year, Mr Trump told Mr Zelenskyy “you’re gambling with World War Three” in a fiery White House meeting, and suggested Ukraine started the war against Russia as he sought to negotiate an end to the conflict.

After Mr Trump’s briefing, Russian senator Konstantin Kosachev said on Telegram: “If this is all that Trump had in mind to say about Ukraine today, then all the steam has gone out.”

Meanwhile, Mr Zelenskyy met with US special envoy Keith Kellogg in Kyiv, where they “discussed the path to peace” by “strengthening Ukraine’s air defence, joint production, and procurement of defence weapons in collaboration with Europe”.

He thanked both the envoy for the visit and Mr Trump “for the important signals of support and the positive decisions for both our countries”.

US

Trump is clearly fed up with Putin – but will his shift in tone force Russia to the negotiating table?

Published

19 hours ago

July 15, 2025

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Trump is clearly fed up with Putin - but will his shift in tone force Russia to the negotiating table?

As ever, there is confusion and key questions are left unanswered, but Donald Trump’s announcement on Ukraine and Russia today remains hugely significant.

His shift in tone and policy on Ukraine is stark. And his shift in tone (and perhaps policy) on Russia is huge.

Ever since Mr Trump returned to the White House he has flatly refused to side with Ukraine over the Russian invasion.

He has variously blamed Ukraine for the invasion and blamed Joe Biden for the invasion, but has never been willing to accept that Russia is the aggressor and that Ukraine has a legitimate right to defend itself.

Today, all that changed. In a clear signal that he is fed up with Vladimir Putin and now fully recognises the need to help Ukraine defend itself, he announced the US will dramatically increase weapons supplies to Kyiv.

But, in keeping with his transactional nature and in a reflection of the need to keep his isolationist “America-First” base on side, he has framed this policy shift as a multi-billion dollar “deal” in which America gains financially.

American weapons are to be “sold” to NATO partners in Europe who will then either transfer them to Ukraine or use them to bolster their own stockpiles as they transfer their own existing stocks to Kyiv.

“We’ve made a deal today,” the president said in the Oval Office. “We are going to be sending them weapons, and they are paying for them. We are manufacturing, they are going to be paying for it. Our meeting last month was very successful… these are wealthy nations.”

This appears to be a clever framing of the “deal”. Firstly, America has always benefited financially by supplying weapons to Ukraine because much of the investment has been in American factories, American jobs and American supply chains.

While the details are not entirely clear, the difference now appears to be that the weapons would be bought by the Europeans or by NATO as an alliance.

The Americans are the biggest contributor to NATO, and so if the alliance is buying the weapons, America too will be paying, in part, for the weapons it is selling.

However, if the weapons are being bought by individual NATO members to replenish their own stocks, then it may be the case that the US is not paying.

NATO officials referred all questions on this issue to the White House, which has not yet provided clarity to Sky News.

It is also not yet clear what type of weapons will be made available and whether it will include offensive, as well defensive, munitions.

A key element of the package will likely be Patriot missile batteries, 10 to 15 of which are believed to be currently in Europe.

Under this deal, it is understood that some of them will be added to the six or so batteries believed to be presently in Ukraine. New ones would then be purchased from US manufacturers to backfill European stocks. A similar arrangement may be used for other weapons.

The president also issued the Russian leader with an ultimatum, saying that Putin had 50 days to make a peace deal or else face 100% “secondary tariffs”. It’s thought this refers to a plan to tariff, or sanction, third countries that supply Russia with weapons and buy Russian oil.

This, the Americans hope, will force those countries to apply pressure on Russia.

But the 50-day kicking of the can down the road also gives Russia space to prevaricate. So, a few words of caution: first, the Russians are masters of prevarication. Second, Trump tends to let deadlines slip. And third, we all know Trump can flip-flop on his position repeatedly.

Maybe the most revealing aspect of all this came when a reporter asked Mr Trump: “How far are you willing to go if Putin sends more bombs in the coming days?”

“Don’t ask me questions like that…”

Mr Trump doesn’t really know what to do if Mr Putin continues to take him for a ride.

Mr Biden, before him, supplied Ukraine with the weapons to continue fighting.

If Mr Trump wants to end this, he may need to provide Ukraine with enough weapons to win.

But that would prolong, or even escalate, a war he wants to end now.

There’s the predicament.

US

‘Disgusting’ antisemitic and racist messages posted on Elmo’s X page by hacker

Published

21 hours ago

July 15, 2025

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'Disgusting' antisemitic and racist messages posted on Elmo's X page by hacker

An X account for the Sesame Street character Elmo has been targeted by an unknown hacker who posted antisemitic and racist messages.

The profile is followed by more than 650,000 users on the social network – and usually posts upbeat and motivational updates.

Sunday’s messages, which have since been deleted, called for violence against Jews, insulted Donald Trump, and referred to alleged files related to Jeffrey Epstein.

In a statement, Sesame Workshop said the X account has now been secured – and described the posts uploaded to Elmo’s page as “disgusting”.

This is the latest controversy to befall Elon Musk’s platform in recent days.

Last week, X’s AI chatbot Grok also produced content with antisemitic tropes, which were later removed and denounced as “inappropriate”.

Musk purchased the website, formerly known as Twitter, back in 2022 – with extremist content increasing against a backdrop of less moderation.

The Anti-Defamation League, a US organisation that fights antisemitism, said: “It’s appalling that Elmo’s official account, known for spreading kindness, was hacked solely to spread violent antisemitism.”

“Antisemitism on social media fosters the normalisation of anti-Jewish hate online and offline – and contributes to an increasingly threatening environment for Jewish people everywhere.”

Elmo’s account has not posted since the hack.