FRAGILE CONDITION
Rare disease afflicts young refugee
When Sham is perched at the end of the couch in her family’s home, whisper-singing along with the Paw Patrol theme song on TV, you can’t help but notice her tortured feet curled under her.
When she picks up a pencil crayon to demonstrate her impressive skill at drawing, you can’t help but notice her fused fingers covered in blisters.
When she looks at you with her big brown eyes, you can’t help but notice the bright red patch on her forehead.
And you can’t help but notice how her mother clings to hope in the face of the shattered dream that brought the Syrian family to Canada.
Years ago, in the good times, when Rana Akraa had a few moments to take a breather from raising her family, she would go for a walk around the parks in the beautiful city of Aleppo.
Her husband, Ahmed Khantoumani, worked as a tailor. Looking out from their window, they could see people everywhere. Life was normal. Then, on Nov. 15, 2011, Sham was born, and the war came, and to open the window was to risk death.
The morning after Sham was born, blisters appeared on her fingers, and began spreading to the rest of her body.
Her parents took her to a hospital, where they were told she would die, the couple told The StarPhoenix through translator and friend Doha Kharsa.
A year later, Sham was still alive and a doctor said that since she was growing normally, she would survive.
The symptoms, however, stayed. Sham has epidermolysis bullosa. Children with the disease are sometimes called butterfly children because their skin is as fragile as the wings of a butterfly.
Genetic defects prevent the skin layers from adhering properly to each other, causing areas of structural weakness. The disease affects about one in 17,000 to 20,000 live births, according to the support group DEBRA Canada.
Sham’s body is covered in blisters and her fingers and toes are fused together. Her skin is prone to infection and so fragile it bleeds when her parents bathe her. She has no fingernails. Every night her skin itches relentlessly. She must be covered in creams and bandages at all times, and her dressings must be changed, painfully, three times a week. There is no cure.
Sham’s birth happened the same day Syria’s civil war spread to the city of Aleppo. Shells and bombs started falling everywhere, making it hard to go from place to place for basic necessities. Checkpoints were set up every 100 metres.
One day, Khantoumani’s brother went missing on his way to buy food. They still don’t know what happened to him.
Eventually, the condo building where the family lived was destroyed. For a while they moved from place to place, but they weren’t safe anywhere.
In late 2012, they fled with extended family to Beirut, Lebanon, in order to survive. They also needed to secure treatment for Sham.
It was a long, scary, horrible day of bus travel, facing checkpoints every two hours where they had to get off the bus to have their belongings checked. There was no guarantee they would make it. Even when they did reach the border, Syrian immigration officials threw away their identification.
Life in Beirut was tough, and the family couldn’t afford to send the kids to school. But Lebanese doctors said a cure for Sham’s condition was available in Canada — so that’s where the family headed.
They arrived as refugees in Saskatoon on May 6, 2015, and were disappointed to find the promise of a cure was untrue. Even a pilgrimage to Toronto’s Hospital for Sick Children turned up nothing.
It’s been tough to adjust to life here. When Sham was born, Akraa’s mother didn’t leave her side, but now that family support is gone. Khantoumani hasn’t yet learned English well enough to find work, and the family depends on government support.
The recent video of a bloody, shell-shocked young boy pulled from the ruins of Aleppo also struck a nerve. Akraa feels sad for him and wonders if his family is still alive.
“It’s our country, it’s our city. It’s not easy to watch,” she said.
Sham has trouble going up and down stairs. She can’t run. She notices that she’s different from other kids, and always asks if her older sister Shahed used to be like her. It’s heartbreaking for her parents to see her suffer every day, and to hear that question. Trying to make her feel less different, they say yes, Shahed was like her.
Sham is bright and speaks English better than her parents. Shahed is as fluent as someone born in Canada.
Now coming on five years old, Sham is going into kindergarten. She has loved her time in preschool so far at W.P. Bate School, where she has a teaching associate to help her, and the other kids have learned how to play with her safely. She wonders why school isn’t on the weekends, too.
She loves to draw, even though holding a pencil crayon is painful.
“It’s a new world for her,” Akraa said.
The family hopes a cure can come from trials in the U.S., so that Sham can be a normal girl who doesn’t need their constant care.
“We are just waiting for hope that they find a cure for her,” Akraa said.