For Sana, an eight-year-old living with chronic illness in Damascus, keeping a routine of rigorous self care gives her the best chance of survival.
She was born with a rare condition called Dystrophic Epidermolysis Bullosa, which causes the proteins that build her skin to fail. To keep her fragile exterior from crumbling, she must constantly fortify it with medicated creams and bandages.
Like many other Syrians living with chronic illness, she cannot rely on the country’s devastated medical system to help her with this routine. Instead, she relies on her father, Abu Jalal.*
Abu Jalal says that he works from morning to night to earn just a portion of the money it takes to buy the supplies Sana needs to take care of her skin. “The challenge is not so much that the medications are not available, it’s that the cost has increased,” he says.
According to the U.N., more than 100,000 people have died as a result of direct fighting in the three years since the Syrian conflict began. But Abu Jalal’s battle to save his daughter demonstrates how the indirect impact of the war may be even more staggering.
According to a report released by Save the Children in March, more than 200,000 Syrians have died of “treatable chronic diseases such as cancer, asthma and diabetes – double the number killed by violence.”
Life has never been easy for Sana. Nurse Geri Kelly of debra.org, a foundation dedicated to researching the disease and supporting patients, calls her illness “the worst disease you’ve never heard of. You wouldn’t wish it on your worst enemy. Think of your worst mosquito bite all the time, every day all over your body.”
The war has compounded her chronic pain.
The apartment building where Sana and her family lived in Damascus was destroyed three years ago by shelling. Her mother has been missing ever since then and is presumed dead. Abu Jalal’s grocery stand, once just a place of business, has become his and Sana’s shelter.
Dr. Abdulrahman Zanabli, president of the Syrian American Medical Society Foundation Board, says the constant fighting stymies his and other organizations’ efforts to provide medical care in the country: “We have hospitals that we sponsor and provide backup to, and they were partially or completely destroyed.”
According to a World Health Organization report, 37 percent of Syria’s hospitals have been completely obliterated and an additional 20 percent have suffered extensive damage.
Common diseases like diabetes become death sentences when war constricts the flow of medicine, Zanabli says. For patients with chronic illness, ongoing daily treatment is all but impossible, even in Damascus.
“I met families whose children are dependent on insulin. They want to buy it, but they can’t find it. In some areas, insulin is nonexistent, and even if they can buy it, they cannot refrigerate. Cancer patients who were on chemotherapy had to be cut off.”
Abu Jalal is realistic about the odds of the necessary aid reaching Sana.
Instead, he relies on a piecemeal network of support to protect the routine. A nurse visits about three times a week to replace Sana’s bandages. That’s half as often as recommended, but Abu Jalal says it’s better than never. Beyond that, he relies on prayer. “I wish for peace so people can have a normal life, especially for the children,” he says.
Earlier this month, Sana found out that a family friend in Los Angeles was raising money to send her medical supplies.
It’s a small gesture, but he says it fills Sana with hope.
In a video sent from Damascus she smiles and thanks the family friend and tells her that when she gets better, she’s going to start going to school.
Name has been changed.