Spinal surgeries gives new hope for Kuna family

KUNA, Idaho — Ali Farhan holds court from his corner of the sofa. Physically, he's slowed down by the matte black halo that anchors his head to his body, but his trademark grin still commands the living room.

He and his sister have spent their summer healing, doing physical therapy under supervision, and watching soccer on television at their home in Kuna. But at the end of the summer, when the eight screws that go into his skull are removed, Ali will be on the go.

"I'll be ready to do anything," he said. "Play with my brothers, have fun. I can go to the park. I won't be scared anymore."

Less than two months ago, Ali, 13, and Bara'a, 10, had critical surgery that stabilized their spinal columns to prevent further injury to their spinal cords.

The two have a severe and degenerative form of dwarfism. Before the surgery, a fall or a wrong motion could have meant paralysis or even death. At school, neither child could play outside at recess. Walking was difficult.

The surgery basically fused their skulls to their spines. Ali is expected to have some movement in his neck, while Bara'a probably will have to twist her body to look around.

But what the surgery mostly means is that the biggest danger is over.

"I have hope. I have faith. I have everything now," said their father, Abdul Salman, with his eldest daughter translating. "I am happy. Glad."

The family — Abdul, his wife, Wardah Al Attwani, and their six children — came to America in 2009, after meeting air ambulance helicopter pilot Russell Hayes, who is from Kuna, in Baghdad.

Salman's life was threatened, his nephew kidnapped and his sister killed because of his family's work for Americans. But it was his children's medical issues that clinched the move.

"This is one of the biggest reasons we came here," he said. "Maybe the only reason."

As he talked about his children's surgery, Salman looked puzzled for a moment until the word "relief" was explained to him. He flashed an enthusiastic thumbs-up.

"Relief. Yes," he said. "All miracles come from God. And this is one of them."

Hayes, whose daughter also has dwarfism, helped bring the family to America on a special immigration visa. The two families live next door to each other.

Because of injuries from the war, Salman is unable to work, and Hayes, 61, currently supports the two families with his job as an air ambulance pilot, commuting to Texas.

"Honestly, we're living paycheck to paycheck," Hayes said. But, "I love them and they love me ."

Hayes has been trying to raise enough money to pay for the operations — more than $100,000 each for the medical hardware alone. He started a nonprofit to assist families with dwarf children, but that brings only enough money each month to cover part of the Salmans' living expenses.

"But I felt the children were getting worse, and they needed to get the operations done," said Hayes. "I do not know where the funding is coming from. . One of the plans is I can work 'til I'm 300 years old.

"But the miracle is ... (now) they'll be able to walk for the rest of their lives."

Still, the decision to have the surgeries did not come lightly. The Salmans' eldest daughter, Saja, died after a similar surgery nearly three years ago, from complications because of her dwarfism.

The family met Dr. William Mackenzie, director of orthopedics at Nemours/Alfred I. duPont Hospital for Children in Delaware. Mackenzie is the medical consultant for Little People of America; he and the Salmans met at a conference. His expertise reassured both families.

"I was a little scared," said Ali, remembering the day of his surgery. "I told (Dr. Mackenzie) to eat good, sleep good and drink lots of coffee."

The debilitating disease the Salman children have occurs in one of every 200,000 births, and for it to afflict three children in one family is rare. The children are missing an enzyme, which allows the build-up of tissues in the body.

"Bones become misshapen; they don't grow well. Joints become unstable," said Mackenzie.

The Salman children's wrists, for example, can bend 180 degrees.

Tissue buildup happens elsewhere in the body, too. It affects Ali's hearing and Bara'a's heart.

Hayes hopes that after the children recover from surgery, they can become part of an enzyme study that could put the disease into remission. But they needed the stabilizing surgery first.

The children will face more surgeries in the future on their feet, backbones, hips and knees. Plans for those surgeries will come in due time, said Hayes.

"This is the most important one. . The lifesaving one is done."

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Information from: Idaho Statesman, http://www.idahostatesman.com