Syrian family dodge conflict, but struggle to outrun a deadly disease

DOMIZ REFUGEE CAMP, Kurdistan region of northern Iraq – Little Layla gets her pale green eyes from her father’s side of the family. When they catch the light, they glimmer like a pair of tiny moons.

It’s not the only trait she inherited from her dad, a Kurdish baker who fled from Syria to northern Iraq nearly six years ago. Like him, Layla was born with thalassaemia, a blood disorder that torments her family as much as the conflict back home, and maybe more.

Layla’s sister Rozhda, who is seven years old, has it too. And so did their father, Mazin, who searched in vain for the specialized treatment he needed.

“My husband died in my hands,” says the girls’ mother, Ronia, 30. “I don’t want the same thing to happen to my children.”

“My husband died in my hands. I don’t want the same thing to happen to my children.”

In June, UNHCR Special Envoy Angelina Jolie visited the family’s home in Domiz refugee camp, in the Kurdistan region of northern Iraq, and listened to the story of how they fled Syria in January 2013. The conflict was only in its second year, but it was already taking a toll on the family. Ronia told Jolie the fighting kept her husband from getting proper medical care.

Here in Domiz camp, where Layla was born five years ago, they found safety, shelter and good schools for sisters Rossie and Siham, now 12 and 11 respectively. But health care was costly and limited, even in the nearby city of Duhok. In desperation, Ronia sometimes resorted to begging, or selling her food vouchers, to pay for her husband’s blood transfusions.

It wasn’t enough. Mazin died two years ago, at age 35, leaving Ronia to raise the children on her own. Pregnant at the time, she soon gave birth to their fifth daughter, Valentina, now a toddler of 19 months.

“It must take an unbelievable amount of strength to be able to pull your family through,” Jolie told Ronia. Turning to the girls, she added: “You all are such gracious, intelligent young women. But you need support.”

Without proper treatment, the form of thalassaemia that afflicts Layla and Rozhda can stunt a child’s growth, impair liver function and cause facial bone deformities.

“This illness has taken a huge toll on us.”

Every two weeks, Ronia takes them to the public hospital in Duhok for transfusions. They leave home at 6 a.m., returning ten hours later. Rossie and Siham stay home and look after Valentina, with neighbours checking in on them.

“This illness has taken a huge toll on us,” their mother says. “All I care about is my children.”

As the grown-ups talk, Layla and Rozhda play on a red plastic swing that hangs from the ceiling. The seat is built for one, but because they are small for their ages they both fit easily.

The regular transfusions buy the girls time, boosting their bodies’ supply of healthy red blood cells. But they’re not enough. The girls’ doctor says they also need bone marrow transplants, which are not available in Iraq.

Earlier this year, UNHCR recommended the family for resettlement to a country in Europe. Three months later, a decision is still pending. In the meantime, Valentina has been diagnosed with thalassaemia too.

Ronia handles the stress with calm fortitude. She has enrolled the two oldest girls in school in the camp and is pleased with the quality of education. But sometimes they miss class because they can’t afford notebooks and uniforms.

“Rozhda started school too, but she but couldn’t continue,” Ronia adds, explaining that the illness makes her “tired all the time.”

Rossie is the oldest. Now 12, she’s caught on the cusp – still a child, but bearing many responsibilities to support her mother.

“When I go to visit my friends, they tell me about their situations and I tell them about mine. We try to comfort each other,” she told Jolie. “It is difficult for my mum to care for us. I am supporting my sisters when she goes to hospital.”

After spending time with several other refugee families, Jolie spoke to a group of journalists at the camp. “When there is not even the bare minimum of aid,” she said, “refugee families cannot receive adequate medical treatment, women and girls are left vulnerable to sexual violence, many children cannot go to school, and we squander the opportunity of being able to invest in refugees so that they can acquire new skills and support their families.”

No one pays the price more dearly than Ronia and her five fatherless girls.

“I keep praying for God to find a way to save these children,” she says. “I am afraid I will lose them like I lost their dad.”

Their only hope, it seems, is resettlement to a country that can provide the support they need.

“Ronia spoke to me of her desire to contribute to society wherever she and her children can find help,” said Jolie, who has stayed in touch with the family and is following their case closely. “She is raising her daughters to be good, strong citizens and kind, fair, hard-working people.”