Devastating setback for evacuated Gaza teen after surgery

Before the war, Lamis, a “beautiful child” and youngest of five, loved drawing and attending her special education school, her mother said.

At six months old she was diagnosed with a genetic white matter disease.

Dr Joshua Bonkowsky, a professor of paediatric neurology at University of Utah Health said it was a category of brain disease that leaves a third of children dead by the age of eight.

He was not familiar with Lamis’ case.

Barely any of the diseases are curable, but treatment is available for resulting conditions.

In January, the health ministry in Gaza referred Lamis for treatment abroad for her scoliosis. The ministry recorded that she had respiratory compromise and difficulty swallowing food, and recommended surgery.

Her family reached out to charity HEAL Palestine, which arranged treatment with a US hospital, while an Israeli NGO, Gisha, sought security clearance for evacuation.

In June, Lamis received clearance a day before an evacuation via the Israeli-controlled Kerem Shalom crossing, but did not get on the list in time to leave, according to Gisha.

Then, in late July, her mother received a call from the World Health Organization (WHO) that she and her daughter would be evacuating.

After a last-minute delay – which led Shatha to take her daughter on a two-hour journey back home to Deir al-Balah in central Gaza – they received another call the next day saying the evacuation was back on.

Shatha said goodbye to her husband without knowing when they would see each other again.

“It was really difficult for me,” Shatha said. “I did not want to look back.”