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Having a child with a rare genetic disease is difficult. It's even harder in Gaza

LEILA FADEL, HOST:

Having a child with a rare genetic disease is difficult wherever you live. Izzie Duval is in Kansas City. And her daughter, Dallas Willow, has alternating hemiplegia of childhood, or AHC. Only about 1,000 children in the world are diagnosed with this disease. So when Dallas has what Izzie calls an episode, it can be really scary.

IZZIE DUVAL: On a good day, our children may be walking - if they're able to - talking, playing, able to communicate in their own way. But when they have the episodes, they lose all of those skills. And so they are unable to walk, talk, eat, swallow. My daughter's longest episode has been 10 days. So when I heard about Julia being in an episode for six months, I was very, very worried.

FADEL: Julia Abu-Zaiter is a 3-year-old in Gaza with the same condition. And for the duration of Israel's war there, her father, Amjad Abu-Zaiter, says she's been largely paralyzed, and he needs to get her out.

AMJAD ABU-ZAITER: (Through interpreter) This is a difficult situation for me even before the war. Julia used to - every 10 days - to go through an episode for a couple of days, and then she wouldn't be able to interact with the world. And she needs to leave Gaza. And that's - I have been working for a time, even before the war, to get her a permission to leave Gaza. And these opportunities were already very limited, but now they are not feasible at all because they close the borders.

FADEL: Izzie and Amjad found each other in a support group online.

DUVAL: The parents share tips and tricks, things that help, or when our children are in crisis, we ask, what can we do? And so one day, Amjad posted in the group a video of Julia, and she looked very unwell.

(SOUNDBITE OF ARCHIVED RECORDING)

ABU-ZAITER: Julia. Julia.

DUVAL: And then when I realized that he was in Gaza just from looking at his Facebook, I was like, oh, my goodness. This is every parent with AHC's worst nightmare - to be in a war zone. And there are many triggers for AHC episodes to happen - weather changes or things like that, sickness, but also things like very loud noises, very bright lights, you know, not getting enough to eat, not having enough sleep, getting overheated - all of these things that Julia is literally going through every single day.

FADEL: Izzie speaks English, Amjad Arabic. So they message online with Google Translate. This interview is the first time they're on a call together.

DUVAL: Hi, Amjad.

ABU-ZAITER: Hello, Izzie.

DUVAL: (Laughter) We've never spoken.

FADEL: Oh, really?

DUVAL: Yeah. We exchanged how we pronounce each other's names, but we've never been able to speak (laughter).

FADEL: They're sharing this story because Izzie and other parents of AHC kids are desperately working to get Julia, her sister, Sham, who's also sick, along with their parents, out of Gaza. Specialists in Germany and the United States are waiting to treat Julia.

Are you afraid, Amjad?

ABU-ZAITER: (Through interpreter) I'm afraid for her future, of course. It's very difficult. The hospitals don't operate anymore. We are running away from bombardments, from one corner to another. I have a depression. I don't leave the tent anymore. Two days ago, our house was shelled. I don't know what to do anymore with losing the house, with my daughter's condition.

FADEL: What has been the biggest barrier to trying to get the girls out and to a place where they can receive the treatment they need and trying to get Julia to a place where she can get the treatment she needs?

ABU-ZAITER: (Through interpreter) There is now an approval to get both of the daughters, Sham and Julia, to the UAE, but it doesn't include us. And no one but us can deal with their situation and know how to deal with their situation in the way that we can do.

FADEL: What happens if Julia can't get out of Gaza?

ABU-ZAITER: (Through interpreter) She will die.

FADEL: Is it - I mean, that's hard to hear. Izzie, is that what you think, too?

DUVAL: Yes. Just last year, we lost seven children. Actually, children passed away of the disease, and they weren't in Julia's conditions. You know, they had access to better medical care. And so that is absolutely the worry is that we would lose Julia, not to mention, you know, being worried about bombings and military on the ground.

FADEL: Amjad, if you could tell us something about Julia - like, what's she like?

ABU-ZAITER: (Through interpreter) Julia, she loves me more than her mom. We like to sing for her. I play her music, and she likes to dance when she's able to. But then suddenly, she would get tired and become paralyzed.

FADEL: Izzie and Amjad message every day.

What do you talk about?

ABU-ZAITER: (Through interpreter) She asks about Julia and her condition, and I ask about her daughter - Izzie's daughter - and her condition. She also asks us, what are we doing? Where are we going? How is your situation now?

FADEL: Izzie?

DUVAL: Yeah. I mean, we definitely try to give updates as much as possible about how they're doing and - but we also sometimes just talk about the normal things. One time, he asked if I was busy, and I said I was going to the grocery store, which honestly made me feel extremely guilty to say, knowing that they have so little access to food. And he told me to get him a Coke at the store and said he hadn't had one in seven months.

And yesterday, I was showing Dallas, my daughter, a video of Julia before the war, dancing to a very silly song, and then my daughter loved it. And so then she wanted to record her own video of her dancing to the silly song to send back to Julia.

FADEL: Izzie says Julia reminds her of her own 5-year-old, Dallas.

DUVAL: Dallas and Julia both have curly hair, and they have these precious kind of cherub-like cheeks. And even the videos of them in episodes looks so similar that when Amjad first sent me videos of Julia in episodes, it was difficult for me to watch. And my greatest hope is that we could see them out and see Julia restored to her health.

FADEL: Since, Izzie and Amjad, you never get to talk to each other directly, is there anything that - you're on the phone together. Is there anything you want to say?

DUVAL: Oh, goodness (laughter). It's honestly been a great honor in my life to be able to try to help and be a part of trying to help Julia.

ABU-ZAITER: (Through interpreter) It's an honor to get to know Izzie. I consider her like a sister. We are part of the same family.

DUVAL: (Laughter).

FADEL: Amjad in Gaza, Izzie in Kansas City, thank you both so much. And I really hope that Julia gets out and gets the treatment she needs.

DUVAL: Thank you so much, Leila.

ABU-ZAITER: (Non-English language spoken). Thank you, Izzie.

DUVAL: Thank you, Amjad.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.

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