Gazan, 4, suffering from ‘one in a million’ disorder, has been given a lifeline

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Arish, Egypt
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At just four years old, Julia Abu Zeiter is suffering from an unprecedented neurological disease that can be fatal without treatment.

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

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

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

Julia suffers from an unprecedented neurological problem known as Alternating Hemiplegia of the Formative Years, or AHC. It causes paralysis and recurring life-threatening seizures. Negative incidence exists for the disorder, which is estimated to occur in approximately one in one million births. Its victims have been called “human time bombs” and require constant monitoring for signs of an impending episode. As it progresses rapidly, life-saving measures should be administered briefly.

CNN met Julia and Darren on their way to a makeshift hospital running through the United Arab Emirates, where they were living for the rest of their lives, and then escaped Gaza through the Kerem Shalom crossing to Israel in the south.

The two were among a group of patients who fled the hospital by swimming to continue their treatment in Abu Dhabi, the capital of the Palestinian emirate. Most of these patients are children, including two who are suffering from leukemia.

Located on the banks of the Arish on the northern coast of Egypt’s Sinai Peninsula, the sanatorium is some 40 kilometers from Rafah, the southernmost city of the Gaza Strip, which is now in ruins after Israel began its field operation there in May. .

The city also housed the Rafah border with Egypt, an important land bridge through which two-thirds of the aid coming into Gaza passed. The crossing is closed as it was once seized by Israeli forces.

The 100-bed sanatorium has admitted 2,400 injured Palestinians since February, according to Dr. Ahmed Mubarak, the sanatorium’s director.

Mubarak said Julia is an “invisible victim” of the war, trapped in what Médecins Sans Frontières, sometimes called Docs Without Borders, described as Gaza’s “silent killings, the result of deliberate deprivation”. . The group’s head of extremist methods, Mari Carmen Vinoles, said in May that Israel’s “blockade, delays and restrictions on humanitarian aid and essential medical supplies” had made aid delivery unimaginable.

Julia and Darien are two of many Palestinians displaced by the war in Gaza, which Israel declared in retaliation for Hamas’ October 7 attack, which killed 1,200 people in Israel and more than 250 others, according to the Israeli government. Was taken hostage.

According to the Health Ministry there, more than 38,000 people have died in Israel’s war in Gaza. Much of the enclave has been reduced to rubble and the strip’s population of about 2 million has been internally displaced.

Julia and Darren were pressured to leave their home in northern Gaza when the war started. Her aunt said the four-year-old girl witnessed “explosions and gunfire.”

A punitive siege through Israel has blockaded the enclave, reducing humanitarian aid and forcing Gazans to fight their way in and out. For Julia, the purpose of this was to get her out of treatment, which triggered a sequence of life-threatening seizures.

Darren told CNN that three of Julia’s five medications ran out in one day of combat. Due to this, paralysis continued for 6 months.

With the help of Palestine Kids Holiday Investment (PCRF), a US-based non-governmental group, Julia was eventually able to cross through Israel’s Kerem Shalom crossing, Deren said.

In the corridor of Julia’s temporary wards was once Ibrahim, who was injured in his community home in Jabalya, northern Gaza, when airstrikes hit his building on 21 November. He was seven years old in that life.

Ibrahim was on his way with his aunt, 21-year-old Alaa. Both Alaa and Ibrahim were injured in the airstrike, survived and were then pulled out of the debris, Alaa said. He told that the aunt was seriously burnt, due to which Ibrahim’s hands and legs became useless.

The boy’s injuries did not heal properly, so additional treatment was required.

“Ibrahim and I were the only two survivors,” Alaa told CNN, adding that 30 members of his community were killed in the airstrike. They left Gaza through the Rafah crossing on 28 April, with only one life lost before Israeli forces captured it.

“Look, this is my father,” Ibrahim said, placing a photo of his father, who was killed during the airstrike, on his aunt’s phone.

Before losing their home and community, Alaa and Ibrahim remained in northern Gaza until April, when civilians were facing dire hunger as aid struggled to reach them amid Israel’s military operations and humanitarian aid officials who Said there was great lawlessness and looting of vehicles. ,

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

On Tuesday, the United Nations presented a report via remote experts saying that the death of more Palestinian children due to hunger and malnutrition in Gaza means famine has spread across the territory, blaming Israel’s “deliberate and targeted hunger campaign.” ” Condemned it. The Palestinians view it as a “form of genocidal violence”.

“There was incredible hunger,” Alaa told CNN, sitting on a sanatorium bed as Ibrahim stood there. “We were starving, the main ingredients for food were not there,” Alaa told CNN.

“Hunger was worse for us than the war,” he told CNN. “Those who died, died. But hunger itself destroys us.”

After Julia and Ibrahim leave, with millions of others trapped in the war zone, there are few signs of a ceasefire resolution.

The aid group Save the Kids said in April that nearly 26,000 children were killed or injured in Gaza in six months, just over 2% of Gaza’s total child population.

“Even amid the complexities of war, how can we not understand one universal truth: a child is a child,” said UNICEF spokesperson James Elder, who called for a ceasefire “(which) will allow the hostages to return home.” Meet, and stop the killing of children.” ,

Julia’s aunt Darren said her niece was too fat to handle.

“He needs his mom and dad. I can’t be his mother and father at the same time.” she told CNN. “At the end of the day, I’m a kid crossed with a kid.”