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

Boos and cheers for Trump as he visits Kennedy Center for Les Mis

Published

1 hour ago

June 13, 2025

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Boos and cheers for Trump as he visits Kennedy Center for Les Mis

Les Miserables, what else.

The hit musical about anti-government protest is now showing at the Kennedy Center in Washington DC.

Donald Trump was in the audience for Wednesday’s performance for what amounts to a busman’s holiday.

The narrative explores issues of social justice, love, and the enduring power of human compassion amidst a backdrop of poverty and revolution. Not everyone shares the president’s vision of those themes.

Indeed his presence drew what can only be described as mixed reviews from his fellow theatre goers – cheers and boos in equal measure as he waved from the front row of the circle.

The script of Les Miserables barely presents a break from the day job – Trump won’t be the only one getting a sense of art imitating life, as the real thing plays out on the streets of LA.

It is the first show the president has chosen to attend since he made sweeping changes at the iconic venue, prompting an outcry and accusations that he was politicising art and ‘MAGAfying’ the venerated institution.

According to CNN, a number of Les Miserables cast members had planned to sit out the performance in protest.

The Kennedy Center is a prestigious venue that showcases the best of American performance art.

More than 2,000 shows per year include the famous honours ceremony, an annual event that celebrates artists who have made a significant contribution to US culture.

Honourees through the years have included Joni Mitchell, Aretha Franklin, the Grateful Dead and Francis Ford Coppola.

Following his election in November, Trump made himself chairman of the Kennedy Center’s board and replaced members with political loyalists.

Traditionally, the board has been made up of individuals from across the political spectrum; after his election, Trump got rid of 18 members and replaced them with political soulmates, including his chief of staff Susie Wiles and Fox presenters Laura Ingraham and Maria Bartiromo.

Donald Trump signalled a change in artistic direction at the Kennedy Center when he wrote on social media of “Drag shows specifically targeting our youth”, and said of its production schedule: “We didn’t like what they were showing, we’re going to make sure it’s good and it’s not going to be woke.”

His changes prompted a number of acts to cancel shows at the venue in protest. The touring production of Broadway hit Hamilton cancelled dates, as did actor and producer Issa Rae, writer Louise Penny and Pulitzer Prize-winning folk musician Rhiannon Giddens.

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Trump’s attendance at the Les Mis performance was designed to boost fundraising, with donors paying up to $2m to attend a reception with the president.

Ticket sales and subscriptions have, reportedly, slumped since Trump’s changes although the centre’s management points out its campaign to renew subscriptions has been launched later this year than last.

Trump watched the performance of Les Miserables from the presidential box, in the company of his wife, Melania.

Vice president JD Vance was also there. When he attended a performance by the National Symphony Orchestra in March with his wife, he was booed by members of the audience.

US

Why Trump’s military ‘birthday’ parade is so controversial

Published

1 hour ago

June 13, 2025

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Why Trump's military 'birthday' parade is so controversial

For the first time in more than 30 years, tanks will roll through the capital of the United States.

The 250th anniversary of the United States Army could see hundreds of thousands descend on Washington DC to watch as 60-ton M1 Abrams battle tanks and Paladin self-propelled howitzers rumble along the streets.

But, like almost everything Donald Trump is involved in, it has not come without controversy or criticism.

It wasn’t originally planned as a birthday celebration – the event had been in the works since before Trump was elected – but earlier this year the President announced his intention to add a massive military parade to the event, which would coincide with his own 79th birthday.

Speaking earlier this week, Trump said it is going to be a “big day”, adding: “We want to show off a little bit.”

Officials have estimated around 200,000 people could turn out, including protesters, plus 6,600 soldiers, 150 vehicles and 50 aircraft.

More than 1,500 ‘No Kings’ demonstrations have also been planned across the US, but the group has said it will not be holding events in Washington DC, in part to avoid a direct confrontation.

It comes as the president warned that any protesters who rain on his military parade “will be met with very big force”.

Does the US typical hold military parades?

Unlike other countries, military parades in the United States are fairly rare, but Trump has made no secret of his desire for one.

The last time such a major display took place in the US it was in 1991, when tanks and thousands of troops paraded through Washington to celebrate the ousting of Iraqi president Saddam Hussein’s army from Kuwait.

During Trump’s first administration, he ordered the Pentagon to look into holding a display after a visit to France in 2017.

He was seemingly inspired after witnessing the country’s Bastille Day parade, and attempted to plan a Veteran’s Day parade for 2018. However, this was cancelled due to “ridiculously high” cost estimates.

Trump ultimately settled for a display of tanks and other armoured vehicles during a fourth of July celebration, named Salute to America, two years later.

What is happening on the day?

Saturday will start with a wreath-laying ceremony in the morning at Arlington National Cemetery, followed by an army birthday festival on the National Mall in DC. The festival will include equipment displays and military demonstrations.

The day will conclude with a military parade throughout the city, overseen by Trump.

After the parade, the US Army Golden Knights team will parachute in and present the president with a flag.

How much will it cost?

All the celebrations will cost the US Army between $25 million (£18.51m) and $45 million (£33.33m), officials told Reuters.

These estimates include costs that will be born by the city of Washington, include litter clean up. The event will involve 18 miles of fencing and 175 metal detectors being installed in the capital.

The military has also begun taking steps to protect the streets from damage caused by heavy tanks, including laying down metal plates in some areas.

The Army said it will pay for any unexpected repairs if needed and has set aside several million dollars in case of damage.

Why is it controversial?

President Trump’s critics have called the parade an authoritarian display of power, that is particularly wasteful as his administration seeks to slash federal spending.

The cost of the Army’s celebration is several million dollars more than it would have been without a parade, officials said.

Among the critics is California Governor Gavin Newsom, who has been trading barbs with Trump since the outbreak of riots in LA.

“And we all know, this Saturday, he’s ordering our American heroes – the United States military – forcing them to put on a vulgar display to celebrate his birthday, just as other failed dictators have done in the past,” he said.

“This is his ego and making everything about ‘him’,” Senator Jack Reed, the top democrat on the Senate Armed Services Committee, has also said.

But other officials have pointed out plans for the Army’s 250th birthday began before Trump won the presidential election, and it is not officially an event to mark his birthday – the dates just happen to be the same.

How will it compare to military parades around the world?

One of the criticisms of the parade is that it is a show of military might more often seen in authoritarian countries, such as North Korea, Russia, Iran and China.

This is because tanks in the streets are symbolically associated with these regimes, where they are designed to inspire nationalism and fear, whilst also promoting obedience – they often take place under the watchful eye of their country’s leader.

Russia holds its annual Victory Day parade on 9 May to commemorate the country’s Soviet victory over Nazi Germany. In recent years, it has been used to protect military strength during the Ukraine war.

China holds a National Day parade on 1 October every ten years, or on key anniversaries, to celebrate the founding of the People’s Republic in 1949.

In Iran, an Army Day Parade takes place in April, a month after the country’s Revolution Day celebrations.

North Korea holds parades on key dates like Kim Il-sung’s birthday, or the ruling party’s foundation day. Taking place in the country’s capital of Pyongyang, the display will often feature new weapons, closely watched by leader Kim Jong-un.

But not every country that holds a military parade is necessarily authoritarian.

The UK holds its annual Trooping of the Colour every summer to celebrate the birthday of the British Monarch.

US

Israel defied Trump and chose to act now

Published

3 hours ago

June 13, 2025

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Israel defied Trump and chose to act now

One word did the heavy lifting in Marco Rubio’s statement: unilateral.

The US secretary of state was keen to emphasise that strikes on Iran were Israel’s decision alone.

Israel-Iran latest: Iran retaliates after airstrikes

But that was not enough for Iran’s foreign minister, who claimed Israel could not have carried out the attack without support from America.

President Donald Trump had urged Prime Minister Benjamin Netanyahu not to attack Iran.

The two leaders had what was described as a heated 40-minute exchange by telephone last Monday.

Speaking just hours before the attack, Trump said he feared such action would destroy US hopes of agreement with Iran.

Time and time again, the US president has insisted that Iran cannot have a nuclear weapon.

But the Americans and Iranians have been engaged in negotiations for months as the US president sought a diplomatic solution. At one point, he even appeared to concede slightly on enrichment.

But Israel claimed the weaponisation of enriched uranium posed “a clear and present danger to Israel’s very survival”.

Netanyahu values his relationship with Trump, but the timing of this action was on Israel’s terms.

Washington was informed in advance – the president’s national security team watched the strikes in real time in the situation room at the White House.

Afterwards, they said their number one priority was the safety of US personnel.

America had already restricted the movement of its staff in Israel and begun evacuating non-essential staff from its embassy in Baghdad.

Marco Rubio sent a clear warning: “Iran should not target US interests or personnel.”

They don’t want to be dragged into this, but have stated that they will protect Israel, if necessary.

America didn’t choose this moment, but knows the threat this escalation poses for US staff in the region.