Girl stranded near Jordanian border with rare eye condition is going blind

Ten-year-old Hala is slowly losing her vision. Stranded with her family and tens of thousands of displaced Syrians in the barren stretch of no-mans-land between Syria and Jordan, her sight worsens a little bit each day.  

Hala is near-sighted in one eye, far-sighted in the other and has macular holes in both. These defects in the tissue at the center of the retina require a strict schedule of regular checkups, retinal scans and a new eyeglass prescription every two weeks, Faiza Hasan a-Salah, Hala’s mother, tells Syria Direct’s Noura al-Hourani.

Hala’s family landed in Rukban after fleeing Palmyra in 2015 when the Islamic State first captured the ancient town. Since arriving in the no-man’s land, Hala has received no medical care beyond vitamins and painkillers.

 Hala, earlier this week. Photo courtesy of family friend Mohammed al-Homsi.

Two clinics serves the estimated 75,000 displaced Syrians inside Rukban and Hadalat, two camps located on the demilitarized zone on the Jordanian-Syrian border. The displaced Syrians in both settlements have sporadic access to clean water, food and medical care.

“Seeing my child this way shatters me,” says a-Salah, 35. “I’m begging humanitarian organizations to have compassion for my daughter.”

Q: How is Hala doing now? Have you consulted doctors in the camp?

Since coming to Rukban, we haven’t kept up with Hala’s treatment at all. Her vision is getting worse every day.

But we have no way of treating her, especially considering the terrible state of health care inside Rukban. There are no doctors or medical supplies.

We’re facing tough times—my husband can barely put enough food on the table, let alone take care of Hala’s eyes.

Hala has started to experience severe eyestrain, symptoms of which include blurred, cloudy vision and headaches.

We have visited the clinic in the camp several times, where a general practitioner—who is actually a third-year medical student—examined Hala and reviewed her old medical reports. He said that she has retinal swelling, but couldn’t provide us with a more detailed picture because he lacked supplies and expertise. So he prescribed her some vitamins and painkillers.

Q: When did you discover that Hala had a vision problem? What advice did doctors give for managing her eye condition?

When Hala was in first grade, her teacher and I realized that she had trouble seeing. So I took her to an ophthalmologist in Palmyra, who gave her an eyeglass prescription to try out for 15 days. For those two weeks, Hala experienced constant headaches. We went back for a checkup, and the doctor changed Hala’s prescription. But that didn’t make a difference; Hala’s eyesight continued to weaken.

After running more tests, the doctor told us that the blind spots in Hala’s eyes were expanding, and that she needed to be transferred to a hospital in Damascus to undergo more thorough testing.

We went to an ophthalmology center in Damascus, and staff there referred us to Dr. Maha a-Shebani at the Eye and Ear Specialty Hospital. She said Hala needed a retinal scan immediately.

After running the test, Dr. a-Shebani consulted a British doctor about the results. She then informed us that Hala has an extremely rare eye condition and has macular holes. To avoid going blind, Hala needs a checkup and a retinal scan every four months. In addition, her eyeglass lenses need to be changed every 15 days. The doctor told us that we couldn’t afford to neglect her eye care.

We followed the treatment plan and within a year she was getting better. She also took vitamins and changed her diet. I was so relieved to see that her vision had become stable.

Unfortunately I didn’t know what the future had in store for us. We fled Palmyra in 2015, fearing for our lives. But I never imagined what we’d experience in Rukban. Here, we’re just sitting around, waiting to die.

Q: Have you contacted the Jordanian authorities or humanitarian organizations to request permission for Hala to enter Jordan?

Yes, but we haven’t received approval yet. I implore the Jordanian authorities and responsible parties to have mercy on Hala, and save her from a dark future that is devoid of her dreams.

There has to be a way to stop our suffering. We’re in the middle of the desert, living among thousands of sick people and hundreds of children who need medical care—the most basic human right.

Humanitarian organizations need to uphold their duties toward us. Every day, the people of Rukban and their children are dying from preventable and curable conditions simply because they can’t access medical care.

Seeing my child this way shatters me. Hala’s friends get to laugh, play and go to school without worrying that tomorrow could bring dreadful news.

I hide my tears from Hala because I don’t want to add to her fear or pain.

I’m begging humanitarian organizations to have compassion for my daughter—my own flesh and blood—so that my crushed heart can be happy again.