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Her face looked as if someone had slathered it with a mud mask.

Tapestry Of Love: A Brother, A Sister, And An Odyssey Through Cancer

Pasty in some places, blackened in others. But her skin, Hana says, was still there, even if it had turned a different shade. Badly hurt and on the brink of death, that is how Hana remembered her daughter on the day she was burned. After Aysha was whisked away to Turkey for medical care on the day of the accident, an uncle who accompanied her sent a photo of her face wrapped in white bandages. Instead, the uncle would call regularly with updates from Turkey.

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She was going to be OK. Doctors focused on her lungs especially, which were damaged from the smoke. Hana prayed and cried, waiting for Aysha to be well enough to come home.

Finally, that day came. Hana waited, and when she saw the car coming down the road, she ran out of her house in time to see her little girl step out. She remembers that Aysha wore jeans and a red and white striped dress. Her hair had been shaved off. But it was her face that shocked Hana the most. She did not know that the burned layer of skin had fallen away in sheaths, and that the new skin that replaced it was a combination of grafts, recent growth and irregular-shaped scars.

Aysha did not look like the little girl her mother remembered, but Hana had no doubt she was her daughter. She grabbed Aysha and carried her inside of the house. She sat down, weeping. Hana recalls how Aysha was welcomed back to parts of the community, but the children who used to play with her refused. In May , they boarded a plane and arrived in California.

For the last 10 months, Aysha has lived in Southern California, traveling with a chaperone several days a week — an hour each way from an apartment in Irvine — to the hospital in Pasadena for checkups and surgeries, all to treat the burns and scars that run across her arms, chest, neck and face. She is one of six Syrian children who have come to the U. Given the immigration hurdles and expenses for travel, living and medical care, it would be almost impossible for most Syrian families to travel to the U. She has been active in humanitarian projects since the war in Syria began.

State Department has remained supportive of temporary visas to bring burned Syrian children and their families to the U. The boys are all being treated for their burns at the nearby Shriners Hospitals for Children. All four children and their families live together in one apartment in Galveston.

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Twenty-five more burned Syrian children are currently on waiting lists to come to the U. Currently they do not have enough funding to bring all of the children who need help. There have been half a million deaths and at least two million injuries since the start of the Syrian Civil War in , and the young Syrian patients who show up at Shriners come with gnarled hands, missing eyes and knotty scars, as well as obstructed breathing, hearing and vision.

Some can barely swallow. Their injuries are the direct result of air strikes and, in some cases, chemical weapons attacks. A longtime Syrian-American activist within the Arab-American community, Moujtahed worked on developing the partnership with Shriners as well as getting support from politicians. Those who survive their burns have a really tough, heavy pain, not only from their burns, but also psychologically. Norbury recalls the injuries of one Syrian boy he treated recently.

It looked like he was balancing a baseball on the back of his hand.

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But she still has more surgeries to go. When Aysha is not in the hospital, she plays alone, or studies with a year-old Syrian girl, Hamama, who is also receiving treatment at Shriners and lives with Aysha and her mom in the Irvine apartment. Hamama lost her parents, along with key parts of her memory, when her village was attacked. She cannot recall her past, the accident, or even her family members who died. Hamama Almansoor, 17, in the Irvine, California, apartment where she lives while being treated at Shriners Hospital for Children. They occasionally go to the shopping mall, or out to eat.

Aysha collects dolls, watches Disney cartoons, and loves Skittles. But mostly she longs to attend school in a building outside with other children, even if they stare or laugh at her. It is too risky. Doctors have prohibited her from attending school outside because they worry the sun and environment could harm her already fragile skin and nervous system. Hana homeschools Aysha, who tries to stay in good spirits, even though she wishes she had other kids her age to play with. When she does go outside for brief periods, she worries about what people think of her.

Once, Aysha spotted a woman pushing a stroller.

She noticed a toy fall from the stroller to the ground. Aysha thought of picking up the toy to give to the baby. Aysha shows a photo of herself from before she was injured in a missile attack.


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On the television, a shark tries to catch a dolphin. Hana wears a gray head scarf and a red trench coat, which she has buttoned. She gives Aysha rosewater. She is often so focused on her daughter, she forgets about herself. Hana left five other children behind in Syria. Though Hana and Aysha video chat with their family members back in Turkey and Syria regularly, they know that they will likely not see them again for at least another two years.

That is how long the doctors expect it to take to complete the needed surgeries. Abdullah and Anwar on the merry-go-round at the local theme park in Galveston. A doctor examines Abdullah, while his mother looks on, at the Shriners Hospitals for Children. W hen Aysha was a baby, her family resided in the close-knit village of Heesh, where she and her husband lived off the land, raising animals and growing their own food. They made cheese and traded it for other products.

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Their agrarian life was peaceful, Hana says, until the military came in and ordered everyone in the village to leave. Heesh would become a bloody battleground as opposition fighters and Assad-regime forces clashed — artillery, rockets and mortars dropping over the hamlet, driving out residents and killing those left behind.

Hana remembers gripping Aysha in her arms, carrying a bag of just a few clothing items, and making the two-week trek from Heesh to the border of Turkey on foot, with her husband and six kids. If we make it out alive, we are alive. They spent four years in the camps. Aysha learned to crawl, and walk, between the tents. Since their entire village and extended family members had relocated there too, Aysha knew many people. She would spend her days going from canopy to canopy, hiding and hunting for food. You keep her! The family eventually learned that the fighting had subsided and they could return to Heesh, but when they made the long journey back to the village, they found a heap of rubble, broken glass, burned toys, cracked concrete, dust, dirt and crumbled storefronts.

The ceiling had collapsed. The living room was a hill of rocks. Like the rest of the village, they rebuilt their home, one concrete slab after another. Less than a year later, it was not fully intact, but they had repaired it enough to live within its walls again. The doctor begins to make marks on her ears with a marker. Doctors know the patients may never look the same as before, but they hope to help them live a more normal life by improving their burn injuries and deformities step by step, until they look and feel closer to the kids they are inside.

The ones who skip down halls, sing YouTube songs, and grab for toys like other kids their age — without fear of frightening others. At 10 a.

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Hama tells Aysha to open her mouth. The syringe is filled to the tip with the bright pink liquid. Aysha breathes deeply, gathering the courage to drink it down. She drinks it down with a grimace and wipes her lips.

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Minutes later, Aysha is groggy. Her mom leans in close. Aysha says nothing, her eyes droop. A few minutes later, the nurses wheel Aysha out of the room, down the hall, as Hana watches from behind. Aysha is trying to call out.