Girl, three, with ultra-rare disease denied escape from Gaza for treatment

A three-year-old Palestinian girl with an ultra-rare genetic condition has been forced backwards in her quest to leave Gaza for life-saving treatment.

Julia Abu Zeiter, whose story is being followed by Sky News, was moved with her family from a tent in the southern city of Rafah and relocated to a supposedly safer zone to the north and further away from the border they had hoped to cross.

Speaking to Sky News, her mother Maha said: “We were going through the travel procedures to leave Gaza. When the time for us to travel through Rafah crossing got close, the Israelis occupied the crossing, and they told us they want to invade Rafah.”

She added: “I was between two fires, not knowing where to go. Do I go try to travel to treat my daughter or do I flee to another place? I did not know where to go.”

The family’s plight is reflective of the cases of many thousands of other children in Gaza who are injured or ill and need urgent medical care.

Sky News first met Julia 12 days ago after a family in Washington DC told us about her case.

The Abu Zeiter family and the Frost family were connected because their daughters, Julia and Annabel, both suffer from Alternating Hemiplegia of Childhood (AHC).

Only about a thousand people worldwide have been diagnosed with the neurological disorder.

Known sometimes as the “time bomb disease”, it causes paralysis and seizures. It is compounded by stress and without medication seizures can be fatal.

Simon Frost, Annabel’s father, has spent the past month in Washington DC bringing together a global network of people in an effort to try to evacuate Julia. Her case is now being driven by the Palestine Children’s Relief Fund (PCRF).

Local staff from the PCRF coordinated the family’s move out of Rafah to a new tent site further north.

On Friday morning, they organised the delivery of medication and solar panel chargers.

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Unpacking their few belongings in a tent provided by the government of the United Arab Emirates, Julia’s mother said: “What made us leave Rafah was that the bombing got too strong. I did not know where to go. When the bombing was too strong, I told myself, ‘I need to leave, where am I going to go?'”

The case is a snapshot of the extraordinary efforts taking place to care for injured and vulnerable children.

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No one is permitted to leave Gaza at the moment. The Israeli and Egyptian authorities who control each side of the Rafah crossing are blaming each other for the prolonged closure.

With a full Israeli assault on Rafah thought to be imminent, some 600,000 displaced people who were sheltering there have now moved back north.

The repeated displacement is psychologically devastating but makes them physically safer, for now.

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The layered challenge for aid agencies like the PCRF is to ensure that injured children are put on third-country lists of evacuees with permission to be flown abroad for treatment.

It is a massive diplomatic and bureaucratic challenge.

For now, Julia, her family and many thousands of others are going nowhere; trapped inside Gaza after more than seven months of war.

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