In Washington DC and Gaza two very different families are united by a very rare disease | US News

It is a paradox that humanity, at its worst, so often also reveals its best.

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 diseases.

It’s about two families in distant worlds. It’s a story about two girls, Julia and Annabel.

I still don’t know how this will end. But that’s how it all started.

It was two weeks ago that my phone rang: an Instagram message from a friend of a friend. Her name is Nina Frost.

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

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

“Human Time Bomb Disease,” she called it, based on parents’ terrifying nightmare that their little girl could have a fatal seizure at any moment.

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

The good news is that Annabel is fine, 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 girl, in Gaza.

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

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

“Julia is three years old – 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 extremely vulnerable – literally on the brink of death.”

Nina told me how she and her husband, Simon, are trying to organize the impossible: getting specialized medicines to Gaza and, ultimately, trying to get Julia and her family out.

Nina was modest about an undertaking that I now know was exhausting and expensive.

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

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

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

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

The footage shot by our team confirms what Nina feared in her message to me.

Julia and her family are in the most difficult conditions. The house next to the tent was bombed a few days before our team’s visit.

The Abu Zaiters are now trapped in the city that could be the next battleground and with a daughter whose condition is worsened by even a modicum of stress, a girl with, as Nina told me, “time bomb disease.”

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

“Then a man called Simon contacted us and said he would see if he could help, because his daughter’s situation is similar to mine.”

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

It’s humbling to hear their words – about their own daughter, but also about fighting for a stranger.

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

We see videos of Julia that Amjad sent to Simon.

“Our children are all so similar… we feel a connection with so many families and with our world of rare diseases,” Nina tells me.

“It’s like that, but on steroids. I mean, we are very distressed by the situation they are facing.”

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

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

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

“They don’t have the medications they need and the doctors they need to actually adequately treat and prevent the episodes and treat them when she has them,” says Simon.

“So we’re trying to get a group together that can support her. It’s been constant communication and very difficult with translation issues,” Simon tells me.

In Gaza, Julia’s mother is desperate. “Our conditions due to the war are below zero.

“Our situation is horrible. I cannot provide food or drink for my daughter. I can get medicine despite many difficulties, and I tell myself that getting these medicines is more important than getting food for us.”

Against all odds, Simon managed to coordinate with the right people to get the right medication to Julia in Gaza.

Through the close AHC network, one doctor encouraged another who knows another and another. That’s how it works. Threads of kindness sewn together.

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Now the challenge is to take Julia to Egypt and then board a medical flight to Abu Dhabi. It will be difficult, perhaps impossible.

“And it looks like she actually refused,” says Nina looking at Julia’s most recent videos.

“I mean, it looks like exactly what we would have predicted happened. She went from being a happy three-year-old with a profoundly difficult illness to becoming a shell of herself.”

“I feel like I’m losing her,” says Maha with Julia in her arms. “She’s dying right next to me and I can’t do anything. What I fear most is losing my daughter.”

There is some chance of a safe extraction soon. It’s not guaranteed, but it’s some hope for a girl in a place where uncertainty is everywhere.

This is a story about two families worlds apart but linked by an illness.

I still don’t know how this will end. Sometimes this can feel like a world of hopelessness, but I have some hope.