A 4-year-old Gazan with a ‘one in a million’ illness has been offered a lifeline out of the territory

<i>Giuseppe Cacace/AFP/Getty Images via CNN Newsource</i><br/>

By CNN Newsource

Published July 10, 2024 5:08 AM

By Nadeen Ebrahim, Becky Anderson and Mostafa Salem, CNN

Arish, Egypt (CNN) — Aged just four, Julia Abu Zeiter suffers from a rare neurological disease that can be fatal without medication.

The nine-month war in Gaza nearly took Julia’s life, as the fighting and displacement cut off her access to treatment.

After an arduous journey, she was finally evacuated from the war-torn enclave on June 27, accompanied only by her 21-year-old aunt, Dareen Zeiter.

“The displacement was really difficult, the events in Gaza are very difficult. What Julia saw was very harsh,” Dareen told CNN.

Julia suffers from a rare neurological disorder called alternating hemiplegia of childhood, or AHC. It causes recurrent episodes of paralysis and life-threatening seizures. No cure exists for the illness, which is estimated to occur in approximately one in a million births. Its patients are referred to as “human time bombs” and need to constantly be monitored for signs of an oncoming episode. As soon as it strikes, lifesaving measures must quickly be administered.

CNN met with Julia and Dareen aboard a floating hospital run by the United Arab Emirates, where they had been staying for a week after leaving Gaza through Israel’s Kerem Shalom crossing in the south.

The two Palestinians were among around a dozen patients leaving the floating hospital to continue their treatment in the Emirati capital Abu Dhabi. Most of those patients are children, including two suffering from Leukemia.

Gaza’s ‘invisible victims’

Moored off the coast of Arish on the north coast of Egypt’s Sinai Peninsula, the hospital is some 40 kilometers from Rafah, the southernmost city in the Gaza strip that now lies in ruins after Israel launched its ground operation there in May.

The city also housed the Rafah border crossing with Egypt, a crucial land bridge through which two-thirds of aid entering Gaza passed. The crossing has been closed since it was seized by the Israeli military.

The 100-bed UAE ship has received 2,400 injured Palestinians since February, according to the hospital director, Dr. Ahmed Mubarak.

Julia is “an invisible victim” of the war, Mubarak said, caught up in what Médecins Sans Frontières, also known as Doctors Without Borders, described as Gaza’s “silent killings, the result of deliberate deprivation.” The organization’s head of emergency programs, Mari Carmen Viñoles, said in May that Israel’s “blockades, delays, and restrictions on humanitarian aid and essential medical supplies” have made aid deliveries impossible.

Julia and Dareen are two of countless Palestinians displaced by the war in Gaza, which Israel launched in response to Hamas’ October 7 attack that killed 1,200 people in Israel and took more than 250 others hostage, according to Israeli authorities.

Israel’s war has killed more than 38,000 people in Gaza, according to the health ministry there. Swathes of the enclave have been turned to rubble and almost the entire strip’s population of two million is internally displaced.

Julia and Dareen were forced to leave their home in northern Gaza when the war began. The four-year-old witnessed “explosions and shelling” throughout, her aunt said.

A punishing siege by Israel has choked the enclave, bringing humanitarian aid down to a trickle and preventing Gazans moving in and out. For Julia, this meant running out of her medication, which triggered a series of life-threatening seizures.

Around a month into the war, Julia ran out of three of the five medications she was taking, Dareen told CNN. This triggered a state of paralysis for six months.

With the help of the Palestine Children’s Relief Fund (PCRF), a US-based non-governmental organization, Julia was able to finally evacuate through Israel’s Kerem Shalom crossing, Dareen said.

‘Hunger is what destroys us’

Down the hall of makeshift wards from Julia was Ibrahim, who was injured in his family home in Jabalya, northern Gaza, when an airstrike hit their building on November 21. He had turned seven that day.

Ibrahim was aboard the ship with his aunt, Alaa, 21. Alaa and Ibrahim were both injured in the airstrike, having survived after being pulled from the rubble, Alaa said. The aunt sustained critical burns, while Ibrahim broke his arm and leg, she said.

The boy’s injuries did not heal properly, requiring further treatment.

“Ibrahim and I were the only two survivors,” Alaa told CNN, adding that the airstrike killed 30 members of their family. They left Gaza on April 28 through the Rafah crossing, just a week before Israeli forces seized control of it.

“Look, this is my dad,” Ibrahim said, holding up a photo of his father, who died during the airstrike, on his aunt’s phone.

Before losing their home and family, Alaa and Ibrahim remained in northern Gaza until April, when residents were experiencing severe hunger as aid struggled to reach them amid Israel’s military operations and what humanitarian aid officials said was increased lawlessness and looting of trucks there.

In mid-March, the Integrated Food Security Phase Classification (IPC) assessed that famine is “imminent” in northern Gaza and said it was projected to occur between then and May.

On Tuesday, the United Nations, citing a report by independent experts, said that the recent deaths of more Palestinian children due to hunger and malnutrition in Gaza indicates famine has spread across the entire strip, decrying Israel’s “intentional and targeted starvation campaign against the Palestinian people” as a “form of genocidal violence”.

“There was unbelievable hunger,” Alaa told CNN, sitting on a hospital bed as Ibrahim stood by. “We lived through hunger, the main ingredients for food weren’t there,” Alaa told CNN.

“Hunger was harder on us than the war itself,” she told CNN. “Those who have died, died. But hunger is what destroys us.”

While Julia and Ibrahim have made it out, millions of others remain trapped in the war zone, with few signs of a ceasefire deal in sight.

Nearly 26,000 children have been killed or injured in Gaza in six months, the aid group Save the Children said in April, just over 2% of Gaza’s entire child population.

“Even amid the complexities of war, how can we not grasp one universal truth: a child is a child,” UNICEF spokesperson James Elder said last month, calling for “a ceasefire (that) gets hostages home, and stops the killing of children.”

Dareen, Julia’s aunt, said the responsibility over her niece was too big to shoulder.

“She needs her mother and father. I can’t be her mother and father at the same time.” she told CNN. “At the end of the day, I am a child that crossed with a child.”