When Khaldoun Sinjab graduated at the top of his Damascus high school class in 1994, his parents took him on a trip to the sea to celebrate. A swimming champion on the Syrian national team, Khaldoun spent the afternoon gracefully jumping from the top of the boat into the sea below, impressing his parents and those watching from shore. But then he slipped. The 17-year-old hit his head on a rock as he tumbled into the water, breaking the first two vertebrae in his neck, rendering him a quadriplegic for life.
Doctors gave the boy six months to live. And for six months, he remained in the hospital, machines and doctors buzzing around him, until Khaldoun’s parents simply could no longer afford his treatment. They took him home and bought a respiratory machine, dedicating an entire room in their home in the al-Tal area of rural Damascus for Khaldoun and his army of devices. The young man, once a star athlete with a promising academic future, was now bedridden and entirely dependent on others for any and everything.
Although his life had been turned upside down – after the accident, Khaldoun was left with only the use of his tongue, lips and eyes – he says he never lost hope. He was insistent upon healing and overcoming his paralysis. Shortly after returning home, he began to request books to read. All the family members pitched in to take turns sitting beside his bed, turning the pages for him. Khaldoun continued until he managed to translate a number of English computer programming books into Arabic. His parents employed a typist, and each morning, she would patiently sit alongside Khaldoun as he deciphered and dictated texts to her to type and print.
Meanwhile, Khaldoun’s friends built a glass table that when placed above Khaldoun’s head with a book placed open-faced upon it, it allowed him to read on his own until it came time to turn the page.
Life continued like this for six years, during which Khaldoun was able to master both the English language as well as the field of computer programming. But it wasn’t until 2000 that his friends decided it would be a tragedy to allow Khaldoun’s skill and intellect to go to waste. So they created a mouse that allowed their friend to control a computer with his tongue and lips. Khaldoun went on to create an on-screen keyboard with common words and phrases he uses on a daily basis. The mouse, he says, became his only connection to the real world, so much so that he only parted with it to eat and bathe.
He was then able in that same year to get a job as a programmer at Spacetoon, an Arab television network specializing in children’s programs. And along with occasional freelance work for Syrian websites and programming companies, Khaldoun has managed to support his family despite being unable to leave his bed.
“I never thought of failure. I mean, yes, what happened to me was painful, but I am happy that I still have a brain that I can use to invest all my energy,” Khaldoun told Syria Deeply. “I even fell in love and got married.”
Yusra Hilal, from the same Damascus suburb and five years his junior, told Syria Deeply that word of Khaldoun’s incredible recovery had spread throughout the entire University of Damascus, where she was studying education at the time. “All the students were going to visit him and to get to know ‘this genius,’ myself and my sister included,” she said.
Yusra, who was back in school after a failed marriage, was struggling with her chemistry lessons at the time and happened to mention it to Khaldoun during her visit. Of course, Khaldoun offered to help.
“He offered to give me chemistry lessons. I was surprised by the offer but accepted nonetheless. During my frequent visits we fell in love and he eventually proposed. I was so surprised,” said Yusra.
Her parents, however, were not as excited. “’How can you live with someone who only moves his lips and tongue?’ they asked me,” said Yusra. “I begged them to get to know him better, and as soon as they did, they gave their consent.
“Khaldoon used to always say: ‘Is there a girl that would want to be with me?’ But the truth is that the beauty of his soul would make any girl dream of being with him.”
The two married in 2008, bought a home in the town of Ein Tarma in Eastern Ghouta, and together, have raised Yusra’s daughter Judy who is now 11 years old.
Things changed after the revolution began. The Ghouta area has been one of the hardest hit since the uprising turned violent almost immediately after peaceful protests against Syrian President Bashar al-Assad began in early 2011.
The villages of Eastern Ghouta almost immediately sided with the opposition, and thus, were quick to face violent repression at the hands of Assad’s forces. When the first government raids on Ein Tarma began, the family panicked. Khaldoun, who must be connected 24 hours a day to a breathing machine and mechanisms that help support and facilitate essential life processes, simply had no way to escape. They couldn’t move him.
“Then the electricity cut. It was out for 15 days straight. The only reason Khaldoun is still alive is because of a generator,” Yusra said.
The second raid, said Yusra, was much different. This time, she said, everyone left. Not a single family was left in their thirty-home apartment building. Because humanitarian organizations like the International Red Cross were barred from entering, the family was left with no other option but to move Khaldoun themselves.
“People carried Khaldoun,” said Yusra. “We all carried Khaldoun.” Others carried the generator that kept his vital organs running.
After six months in northern Damascus, however, they were forced to move yet again. “I could no longer get to the city where they sold Khaldoun’s medications due to regime checkpoints. They wouldn’t let me pass,” said Yusra.
As the fighting and the siege gradually tightened, Khaldoun and Yusra realized that they could no longer stay in Damascus. In fact, they could no longer stay in Syria.
“We passed through 16 Syrian army checkpoints before reaching the border with Lebanon, where they refused to let us through with Khaldoun’s medical devices until – four hours later – the Red cross intervened on our behalf,” said Yusra.
The couple resettled in Lebanon’s Bekaa Valley on January 6, 2013, but life has not gotten much easier.
After a year of arguing with the U.N. Refugee Agency about whether or not Khaldoun is truly paralyzed, they were placed in the Relocation Program and their file was shown to the Canadian Embassy. They were quickly taken off the list, however, because Khaldoun, although quadriplegic, has a job.
“In fact, they said they were closing our file entirely because we are working, and there are people who are more in need of relocation than ourselves,” Yusra said. “It was the first time Khaldoun and I felt crushed. How could they treat us with such inhumanity for no good reason?
“Everyone knows Khaldoun’s health situation is not just a matter of money, but a matter of his right as a human to receive treatment. His life is in constant threat due to continuous power cuts in Lebanon.”
Khaldoun, for his part, is measured in his anger, and remains hopeful. “I might have been quite shocked with UNHCR’s position on the matter, but I still have hope that I will live and get to go around in a wheelchair with my wife and daughter, while living in a much safer place than here,” he said. “I can still smile, therefore I am well.”
When Khaldoun’s ever-supportive friends heard of the UNHCR’s lack of cooperation, they appealed to the community activism site Avaaz to support him, and launched a campaign petitioning the British government to take in Khaldoun and his family. But despite the campaign and its tens of thousands of signatures, they haven’t heard a peep from London.
“We do not want to travel for the sake of traveling or seeking refuge,” said Yusra. “We just want to travel so that Khaldoon’s health can be supervised and he can be granted a better chance in life.”
“Isn’t someone who’s seen nothing but a bed and a computer for 21 years entitled to live? See the sky? The rain? Go to the doctor?” she asked. “We cannot fetch a doctor here if anything were to happen to Khaldoon, because the rate is unaffordable. We honestly just want Khaldoun to be able to breathe, and not constantly worry about electricity cuts. Is there anything worse than for a human to dream of simply breathing without fear?”
Top image: Syrian refugees stand outside their tents a refugee camp on Wednesday October 28, 2015, in the town of Hosh Hareem in Lebanon’s Bekaa Valley. The United Nations said Tuesday the worsening conflict in Syria has left 13.5 million people in need of aid and some form of protection. (AP Photo/Hassan Ammar)