Ten-year-old Hala Shaheen is slowly going blind.
Before the outbreak of Syria’s war, she was receiving successful treatment for retinal detachment – a condition that causes the tissue sending visual messages to the brain to come loose. Regular check-ups and specialist care meant that her sight was improving.
But when fighters with the Islamic State of Iraq and the Levant (ISIL, also known as ISIS) group stormed Hala’s hometown of Tadmur in May 2015, her family was forced to flee to the Rukban refugee camp, located in the no-man’s land between Syria and Jordan. Leaving their home also meant leaving behind any chance of Hala’s sight improving. She is now totally blind in one eye, and increasingly so in the other.
“I don’t want to continue living with this level of pain and suffering,” Hala told Al Jazeera in an interview via WhatsApp, a pink patch covering her blind eye. “I would be so grateful to anyone or anything that can rescue my vision.”
Her father Ibrahim, formerly an employee in a phosphate mine, can barely provide food for his five daughters, let alone pay for Hala’s expensive eye treatment.
“There is no father in the world who does not want to provide the best for his children, in terms of nutrition and health,” said Ibrahim Shaheen, 46. “But because of the war I lost my job, and with that the means to be able to support my family.”
Even if Ibrahim could pay, there are no specialist doctors at Rukban, where some 75,000 people are stranded between Syria and a closed Jordanian border. The few visits to the dusty tent city offering free medical care have not been able to provide Hala with the necessary treatment, her family says; instead, she requires urgent evacuation for eye surgery to rescue the last of her vision.
“My heart hurts so much when I see my daughter in this situation, in comparison with the other children who can run around and play and study without thinking that tomorrow the worst [going blind] is going to happen,” Hala’s mother, Faiza, told Al Jazeera.
World Braille Day was observed last week, but little public attention has been paid to the plight of Syrians suffering from visual impairments, either caused by or worsened by the country’s five-year-old civil war. Since Jordan shut its border with Syria last summer after a car bomb, only a handful of refugees have been allowed out for medical treatment, according to Doctors Without Borders.
In refugee-hosting countries, including Lebanon, Turkey and Jordan, more often than not it falls to NGOs and charities to provide urgent medical treatment, and for those with visual impairments, long-term supports such as Braille machines and adapted computers.
But because they are not considered life-threatening, eye injuries may not be a priority for such organisations, which face large funding shortfalls. Last year, just over half of the $300m needed for Syrian refugee healthcare programmes in the region was available, according to UNHCR figures.
Eyad Fadloun, the head of medical programmes at the Union of Relief and Development Associations in Lebanon, said that vision care was suffering as donors funded “other priorities”. The NGO had a small programme offering eye treatment, but six months ago it was forced to close.
“The backing ended, and donors have other priorities now, with conflicts in Yemen and Somalia,” Fadloun told Al Jazeera. “They are seeing people [in other countries] dying of malnutrition, and eyes are not the priority.”
There are no overall statistics on how many Syrians have lost their sight because of conflict-related wounds. But indiscriminate bombing of civilian areas, attacks on healthcare facilities and a lack of access for medical workers have led to deteriorating conditions.
When Assad regime forces retook Aleppo city in December and civilians were displaced to the surrounding areas, doctors reported multiple cases of untreated shrapnel wounds causing loss of vision.
In southern Turkey, the Molham Volunteering Team NGO funds medical treatment for individuals who are at risk of going blind owing to war-related injuries. One patient, Kousay, a young man who became blind in one eye and suffered retinal damage to the other after being injured in Syria, needed $200 for treatment expenses that he was unable to cover himself. Another patient, Khaleel, was in a similar situation, without a sponsor or a source of income to cover hundreds of dollars in medical bills.
dying of malnutrition, and eyes are not the priority.”]
Even more common are people such as Hala, risking partial or full blindness owing to the worsening of pre-existing conditions in wartime. Fadloun said that his organisation had a waiting list of 400 people for cataract operations, which cost $700 each. If treatment does not become available, patients risk losing their sight completely.
“Eye care for Syrians in Lebanon is a big problem, but no one is talking about it much,” he said.
Even for those able to access medical care, short-term treatment is not enough. Syrians whose vision has been damaged beyond repair need help managing their condition and living with it confidently.
In Lebanon, blind children luckier than Hala are able to continue their education with NGO support.
Beyond Association, a local organisation partnered with UNICEF, offers specialist help for children with impaired vision, including schooling, psychosocial assistance and mental health support.
In groups of no more than 15 at a time, children spend mornings in the NGO’s centres in the Bekaa Valley, learning how to read and write using Braille. Once they have accomplished this technique, they can learn how to use a computer.
Chief executive Maria Assi said that having mastered Arabic, the children move on to English. “They love the language, so really want to learn it. They are taught by a man who himself only has 20 percent vision.”
Afternoons are spent doing sports, theatre and music with other classes, to avoid stigma and to develop relationships with sighted children. Assi told Al Jazeera that it was important for families to understand that blindness need not mean life as an invalid.
“Parents sometimes give promises that after an operation in Syria, their child will be able to see again, but that is wrong. Instead the child needs to think about how to be strong as a blind person,” she said.
Beyond Association works to allow Syrians with impaired vision to become independent in the long term, and to break away from reliance on aid.
“We are able to see the person’s strengths and how they can be independent in the future,” Assi said. “In the camps, they are treated with pity just because they are blind, but that is not right. Despite a person being blind, he can work and be proud in his work; he can make money and help others, too.”
Additional reporting by Mohammed Hassan al-Homsi