Syrian white phosphorus victim dying as she waits for $32,247 drug

HATAY, Turkey — Raidah Dugain cannot lie down or lean back for too long. If she does, the 17-year-old chokes on water. Both her kidneys have failed, unable to excrete excess body fluids, so she has to make sure that she sits up on a wheel chair.

"Even at night I sleep on the chair," says Dugain. "I am really tired. I am not well at all."

A resident of Syria's Idlib Province, Dugain is the mother of two young children, despite being only a teenager. She says her health began to fail after she was affected by what she and her family believe was a white phosphorus attack dropped by the warplanes of the Syrian regime leader, Bashar al Assad. Although she doesn't remember the exact date of the alleged attack, she says it happened sometime in the first week of September last year.

By late October, her health had dangerously deteriorated. She came to Turkey's Hatay Province, where she is receiving regular blood transfusions and dialysis at a government-run hospital.

Dugain's medical condition is complicated. The illness has taken away the glow of youth from her face: she looks pale, her hands shiver and she is unable to hold her two-year-old son on her lap. She stares at the world with her striking blue eyes. The path that lies ahead of her is full of uncertainty.

The white phosphorus smoke, she says, has contaminated her blood, affecting her internal organs. Her heart has been impacted, too. Last month, the doctors placed a pacemaker in her chest to normalise her heart beat. Her brother, Ali Dugain, offered her one of his kidneys for a transplant. "The doctors said [the transplant] won't work unless her body is decontaminated," Ali says.

The eight-month long battle for survival has been exhausting. The Turkish doctors sound pessimistic about whether she will live. They have suggested that she needs an immediate dose of a drug called Eculizumab, the world's most expensive medicine, which will decrease her dependency on blood transfusions and mean she is able to undergo a kidney transplant. The medicine costs around $440,000 to treat a patient in the US for a year. The price varies slightly in Canada and the UK, where it is also available.

Dugain's doctors estimate one dose will cost $32,247 in the Netherlands. Since the family cannot afford the drug, which isn't even available in Turkey, Ali reached out to the United Nations High Commission for Refugees (UNHCR) in early February, seeking its assistance to help Dugain receive the prescribed treatment. "They (UNHCR) contacted the Netherlands government," says Ali.

The Dutch government covered the cost of the drug through its public healthcare system until March 2016. The country's health ministry has since scrapped the policy because of the drug's extremely high price.

A few days after meeting with UNHCR officials, Ali says, a UNHCR translator told him over the phone that the agency had contacted the Dutch government and it had refused to allow Dugain into the country.

"What perplexed us is the grounds on which Netherlands has rejected our application," says Ali, "The UNHCR spokesperson (an official in Ankara) told me that the government refused to treat my sister because she was married underage."

Stuck in bureaucracy

The seven-year long war in Syria has killed over 470,000 people, according to Human Rights Watch. Hundreds of thousands of men, women and children have been injured; many have lost their limbs in the conflict and many more are silently suffering from other kinds of war injuries. Raidah's injury is such that she cannot show it to the world. It's killing her from the inside.

Though she is uncertain about her survival, her brother is trying every possible way to save her. When the UNHCR called him, he scribbled down the telephone number in his pocket notebook. He keeps trying that number every single day, even though no one answers it.

TRT World contacted the Dutch Consulate General in Istanbul, Robert Schuddeboom, to verify the UNHCR's claim. Schuddeboom denied having received any communication from the UNHCR, and says that the Dutch government's records "do not show of any person in that name" who has sought medical help.

Schuddeboom, however, agreed that "the combination of her marital status and her young age would have been a reason to refuse her application, had she submitted one."

The UNHCR spokesperson in Turkey, Selin Unal, said that the agency is aware of the case and she would prefer to keep its merits "confidential."

But Dugain and her family hope that the UNHCR may negotiate a way out, even though the agency is being discreet about any progress in her case. Haj Ibrahim, Dugain's husband, showed up at the local UNHCR office in Hatay in late March to look into other ways to convince the Netherlands government to accept her application.

"I asked them [UNHCR officials], 'if she survives and turns 18 the next year, will the Netherlands government offer her treatment?' They said, 'we don't know,'" Ibrahim says.

A lean man in his early 20s, with a well-trimmed beard, Ibrahim worked at a mobile repair shop in Jar Janaz, a village which is 38 kilometres away from Idlib's city centre. He's currently jobless, looking after his wife at the hospital, as well as his son — changing his diapers and feeding him milk.

Out of desperation, he told the UNHCR officials that he's willing to go to jail in the Netherlands for marrying Dugain, if that would help his wife's application. "They said 'we don't know if that will convince them [Dutch officials],'" he says.

The night white phosphorus struck

Except bouts of fever and cold, Ali says his sister has never suffered from any serious ailment before. "She ate well and did household chores, without ever experiencing exhaustion," he says.

In early September last year, when their village was allegedly hit by white phosphorus, she was eight months pregnant. It was an unusually hot night. The war had destroyed power lines, casting a menacing darkness over the entire village. The ceiling fans and coolers were defunct, so she and her family slept with bedroom doors and windows open. At around 2am, she says, she woke up to a loud thud.

"The ground shook under my feet. Our neighbours screamed. I struggled to breathe and looked at him [her husband]. He grabbed my son and ran to the underground bunker," Dugain says.

The weight of the pregnancy, she says, had slowed her down. She couldn't follow her husband, collapsing midway. "I came up looking for her," says Ibrahim, Dugain's husband. "I found her lying on the ground, unconscious. Her face had turned yellow."

Ibrahim says that the neighbourhood had been hit by "a rocket containing white phosphorus," and his wife Dugain was affected by its fumes billowing in the air.

Dugain was rushed to a medical centre nearby. An hour later, Ibrahim says, she regained consciousness, after receiving oxygen therapy. "After we came home, she complained of nausea every day," he says.

Two weeks later, Ibrahim says, Dugain's face and body swelled up. He took her to the local clinic, where she was treated after the alleged phosphorus attack. She was taken into surgery and her baby boy was delivered by caesarean.

"A day later she vomited blood," Ibrahim says. "The doctors gave her two blood transfusions. They asked me to get some plasma — white blood cells. I searched for it, travelling 60 kilometres to a city called Sarakab. I couldn't find any."

By October, Dugain was suffering from renal failure. Ibrahim says the doctors at the local clinic told him that the white phosphorus smoke had penetrated deep inside her body, poisoning her internal organs. Her symptoms corroborate with a study conducted by Human Rights Watch in 2009, which says if a person has inhaled white phosphorus "kidney failure and infections are characteristic long-term outcomes."

The man who witnessed the attack 

During the course of the vicious and complicated war in Syria, reports of the use of chemical weapons have often surfaced. Some of them trigger a global response; many seem to go unnoticed. Such attacks are documented by mobile phone video and pictures. But attacks which take place in areas lacking high-speed mobile connectivity are rarely recorded for posterity. The incident in which Dugain was injured was, like so many other similar attacks, never reported upon.

Mohammad Al Khalid, a 25-year-old resident of Jar Janaz who's also a neighbour of Dugain's, says that he witnessed the attack. He doesn't remember the exact date either. "Two women and children died in it," he says. "I was about 200 metres away from [the area where the rocket struck]. Several women got sick from that attack."

Al Khalid says the attack "most probably" happened at 2am on September 1. Coincidentally, the Syrian American Medical Society, a non-profit, has documented a chemical attack as reportedly taking place on September 1 in a city called Suran, a 45-minute drive from Jar Janaz, suggesting the rockets may have been part of a series of air strikes that day. From the pictures of the injuries of Suran victims, it's clear that they were hit by white phosphorus.

Under international humanitarian law, white phosphorous can only be used in areas with no civilians. White phosphorous causes horrific burns, and if pieces land on a person's skin they can continue burning right "down to the bone." In the longer term, it is linked to cancer and birth defects in civilian populations living in contaminated areas.

The areas controlled by rebels in Syria were heavily hit by incendiary munitions throughout the last summer, according to Human Rights Watch. Between June and August, the Assad regime and Russian air forces are accused of hitting civilian areas at least 18 times with incendiary weapons, violating Protocol III of the Chemical Weapons Convention, a treaty to which both Syria and Russia are signatories. The US has also confirmed it has used white phosphorous in Iraq in recent months (and previously used the toxic substance in the 2004 assault of Fallujah).

Since the September attack, most of Jar Janaz has become empty. People have either moved out of the country, or fled to remote villages far away from the frontlines of the war. "Thankfully, I didn't get injured," says Al Khalid, "But a lot of people were harmed. Women are giving birth to deformed children. Many of them have been referred to Turkey."

Though Dugain's own life was at risk, she gave birth to a healthy baby boy. Her husband Ibrahim left him with his parents, who have moved to a city named Sarakab. "If we bring him here, how are we going to take care of him?" he says.

Almost every day, Dugain has face time with her baby via WhatsApp. "He is growing up fast," she says, her eyes beaming with joy. She asks her husband to pull up a recent picture of the baby. The boy looks like his mother — fair skinned with deep blue eyes.

Dugain wants her children to grow up under her watch. Her love for her family helps her to get through the painful days. "My children are keeping me alive," she says. "If I get proper medical support, I can survive."

Additional reporting by Fatima Taskomur