1 American man's fight to save a girl in Gaza he's never met

Separated by an ocean and a war, the two fathers have never met, but are now speaking with each other as often as possible, sometimes several times a day, bonded by love for their daughters.

Simon Frost is a real-estate developer in Washington, D.C., while Amjad Abu Zaiter is a former taxi driver from northern Gaza who has twice in the last seven months had to move his family during Israel's war with Hamas.

Both have young daughters who share the same, rare neurological disease, called Alternating Hemiplegia of Childhood (AHC), which can cause seizures, temporary episodes of paralysis and difficulty breathing, according to the NIH National Library of Medicine.

Symptoms of AHC can be made worse through stress and increased stimuli, such as bright lights or loud noises -- what you could experience in a war zone.

Frost said he first started communicating directly with Abu Zaiter only about a month ago, after connecting on social media, but has since been working around the clock, several hours a day, to help him any way he can.

The two have been communicating mostly through WhatApp text messages with the help of online translations between Arabic and English as well as Facebook Messenger.

"I found out Julia was in trouble," Frost said over the phone, referring to Abu Zaiter's daughter. "I understand what they're going through."

'How difficult it will be to keep her alive'

Frost explained that, even under the best circumstances, with all the comforts of living in a wealthy neighborhood in the nation's capital -- close to some of the best doctors in the world -- his own daughter, Annabel, still struggles.

At 8 years old, Annabel has a hard time walking and talking. She has an aide with her at school. A few times a week, Annabel has episodes of reduced consciousness, which her father describes as similar to seizures. During those episodes, her family or caregiver rushes her to a dark room to administer medication and hope it passes.

"So, I can imagine myself in a war zone with my little one, and how difficult it will be to keep her alive. The accounts I have heard from Amjad have been terrifying," Frost said, explaining why he is working so hard to help a family a world away.

Using his own strong connections throughout Washington, pleading with global nonprofits and pushing U.S. government agencies, Frost has helped secure life-saving medications for Julia and is working to get her out of Gaza.

Two weeks ago, one the organizations Frost has been in touch with, the Palestine Children's Relief Fund (PCRF), was able to facilitate getting Abu Zaiter all five medications Julia requires. She is only three-and-a-half years old and, according to Frost, has a different genetic mutation with more severe symptoms of the disease than even his daughter.

Speaking to ABC News over the phone from Deir Al-Balah in central Gaza, Abu Zaiter described how Julia's symptoms have been worse since the war began.

He explained how his daughter used to experience episodes of paralysis once every few weeks, normally impacting one side of her body or the other but lasting less than a day. Since the conflict began, however, the family has had limited access to medicine and food. The living conditions as well as the constant stress and noise of the violence, had left Julia in a state of almost total paralysis for months. Abu Zaiter sent a video of her seemingly completely limp in a stroller outside a tent where they family had taken refuge.

The medicine they received recently, though, helped Julia regain control of her limbs. Abu Zaiter said she is still experiencing some seizures, but he sent a new photo from this week that shows her in her mother's arms and seeming to wave to the camera.

'Unimaginable circumstances'

Back in Washington, Frost and his wife have invested significant resources in finding new treatments for the disease, even starting their own family foundation. They had long been members of a Facebook group dedicated to families affected by AHC. Frost described it as a "tight-knit" community and, through the group, he got connected with Abu Zaiter, who himself was online looking for any help for Julia.

"It is painful to see this happening to somebody in my same situation, but unimaginable circumstances," he added. "Somebody that is so vulnerable, in such a desperate situation, without food or medicines or doctors or hospitals available -- things we take as necessities over here. It has given me a new perspective."

Beyond medication to keep her stable, Frost and Abu Zaiter hope get Julia evacuated out of Gaza altogether. They had put together a plan to move her from Egypt to the United Arab Emirates, with the the help of PCRF and other nonprofits such as Anera, but they said the last few weeks had been in a bit of a holding pattern.

They said border officials and Palestinian partners told them that only Julia and her sister, who is 5 years old, were cleared to travel out of Gaza, but neither of their parents. Frost said he heard conflicting reports about whether Julia's parents were rejected or just not yet approved. But with the children so young and Julia's condition, leaving without at least one parent was not an option.

Then, they said, came an even bigger roadblock.

Earlier this month, the Israeli government seized control of and closed the Rafah border crossing between southern Gaza and Egypt, trapping inside even those who had been cleared to leave and cutting off a major route for crucial aid to get into the war zone.

"With the Rafah border closed, there are no, absolutely no medications, no aid, no people going in or out, because the Israeli army has completely seized the Rafah border. And so, we're trying our best to still find medications Julia is in need of and other children that are in need of, but we're running very low on all supplies," Tareq Hailat, the Treatment Abroad Coordinator for the PCRF and a medical student in South Carolina, told ABC News over the phone.

Like so many Palestinians in Gaza, Julia's family fled their home in the north at the start of the conflict and had taken refuge in the southern city of Rafah, but with Israeli troops marching south they were forced this week to flee again.

President Joe Biden and the White House have urged Israel not to carry out a large-scale, military ground invasion of Rafah in southern Gaza and to reopen the border, but Israel has kept the crossing closed and instead ordered a massive evacuation of the city.

Getting Julia out of Rafah

Hailat, whose mother is Palestinian, explained that his organization worked to secure the Abu Zaiter family a tent in a designated safe zone, but had to convince them to leave Rafah. Safe zones have been hit with airstrikes in the past and the move itself felt daunting with Julia unable to walk on her own.

The family had a stroller and a car, but still with hundreds of thousands also forced to evacuate Rafah in the last few days, Abu Zaiter said they had to physically carry Julia for much of the miles-long journey.

"He knows that he's in a danger zone, but he's scared to leave," Hailat spoke of talking with Julia's father the day before the family did leave Rafah. "And they have drinking water. So, he's scared that if they were to move, to leave, there would be no drinking water."

On Wednesday, the Abu Zaiter family with Julia made it to the new tent in Deir Al-Balah in central Gaza and were able to communicate again to their friends in the U.S.

"We are a peaceful people. We hate war. All my life has been war. My children are traumatized. They grew up just hearing shelling and gunshots, and all I want to do is leave and get medical treatment for my child," Abu Zaiter, 31, said on the phone through a translator. "I hope they can pressure them and stand by us and help us, so that she gets the medical treatment that she deserves."

Frost is still pushing for an in-person meeting with U.S. officials and hopes to have a medical evacuation ready and in place should the Rafah border be opened. He has been in touch with AHC specialists around the world too, trying to get advice to Abu Zaiter.

Research and medical groups dedicating to fighting AHC have started funds in Julia's name and made videos telling her story and the difficulties she has faced during the war.

"The biggest problem out of all of this is that these are just children. I mean, no matter what political aisle you're on, wherever you fall on your political ideology, these are just children. They have nothing to do with that. This is just a humanitarian crisis. It's just children that are put in these difficult circumstances due to decisions that are made beyond their control," Hailat said.