{"id":43268,"date":"2024-05-05T04:28:03","date_gmt":"2024-05-05T04:28:03","guid":{"rendered":"https:\/\/news.talkwithrattan.com\/index.php\/2024\/05\/05\/in-washington-dc-and-gaza-two-very-different-families-are-united-by-one-very-rare-disease\/"},"modified":"2024-05-05T04:28:03","modified_gmt":"2024-05-05T04:28:03","slug":"in-washington-dc-and-gaza-two-very-different-families-are-united-by-one-very-rare-disease","status":"publish","type":"post","link":"https:\/\/news.talkwithrattan.com\/index.php\/2024\/05\/05\/in-washington-dc-and-gaza-two-very-different-families-are-united-by-one-very-rare-disease\/","title":{"rendered":"In Washington DC and Gaza two very different families are united by one very rare disease"},"content":{"rendered":"
\"In<\/div>


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It is a paradox that humanity at its very worst so often also brings out its very best too.<\/p>\n

This is a story about the kindness of strangers. It’s a story about hope over hopelessness. It’s about the war in Gaza <\/a><\/strong>but also about the rarest of diseases.<\/p>\n

It is about two families in worlds far apart. It is a story about two little girls, Julia and Annabel.<\/p>\n

I don’t yet know how it will end. But this is how it started.<\/p>\n

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

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

I remember Nina explaining how it was a disease like no other.<\/p>\n

‘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.<\/p>\n

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<\/div>
\n Image:<\/span>
\n The Frost family
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\n <\/figcaption><\/figure>\n<\/div>\n

I’ve followed Nina’s Instagram, @HopeForAnnabel<\/a><\/strong> since we first met.<\/p>\n

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

Nina’s message to me wasn’t about her own daughter. It was about another little girl, in Gaza.<\/p>\n

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.<\/p>\n

“There is a little girl stuck in Gaza with the disease,” Nina wrote to me.<\/p>\n

“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.”<\/p>\n

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\n \"Julia\n <\/div>
\n Image:<\/span>
\n Julia’s mother administers medication
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\n <\/figcaption><\/figure>\n<\/div>\n

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.<\/p>\n

Nina was modest about an endeavour that I now know has been all-consuming and expensive.<\/p>\n

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.<\/p>\n

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.<\/p>\n

“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.<\/p>\n

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\n \"Rare\n <\/div>
\n Image:<\/span>
\n Annabel Frost
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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.<\/p>\n

The images filmed by our team confirm what Nina had feared in her message to me.<\/p>\n

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.<\/p>\n

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’.<\/p>\n

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

“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.”<\/p>\n

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.<\/p>\n

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\n \"Julia\n <\/div>
\n Image:<\/span>
\n Julia Abu Zaiter
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\n <\/figcaption><\/figure>\n<\/div>\n

It is humbling to listen to their words – about their own daughter, but about their fight for a stranger too.<\/p>\n

“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.”<\/p>\n

We look at videos of Julia which Amjad has sent to Simon.<\/p>\n

“Our kids are all so similar\u2026 we feel a sense of connection to so many families and our world of rare disease,” Nina tells me.<\/p>\n

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

“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.<\/p>\n

Amjad’s message highlights concerns he has about his daughter. He is looking for reassurance from Simon.<\/p>\n

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

“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.<\/p>\n

“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. <\/strong><\/p>\n

Over in Gaza, Julia’s mum is desperate. “Our conditions due to the war are below zero.<\/p>\n

“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.”<\/p>\n

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\n \"Rare\n <\/div>
\n Image:<\/span>
\n The Frosts speak to Sky’s Mark Stone
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\n <\/figcaption><\/figure>\n<\/div>\n

Against the odds, Simon has managed to coordinate with the right people to get the right medication into Gaza for Julia.<\/p>\n

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.<\/p>\n

Read more from Sky News<\/strong>:
Man charged over 1966 Illinois murder<\/strong><\/a>
Philippine coastguard hits out at China’s ‘brute force’<\/a><\/strong>
Inside pro-Palestinian protest as police break up UCLA encampment<\/a><\/strong><\/p>\n

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

“And it seems like she’s really declined,” Nina says looking at the latest videos of Julia.<\/p>\n

“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.”<\/p>\n

“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.”<\/p>\n

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<\/a><\/p>\n

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.<\/p>\n

This is a story about two families worlds apart but bound by a disease.<\/p>\n

I don’t yet know how it will end. This may feel sometimes like a world of hopelessness, but I have some hope.<\/p>\n<\/p><\/div>\n