Iraqi family living in Kuna needs help for their two dwarf children

When Russell Hayes got his orders to go to Iraq in 2008, he was a 57-year-old air ambulance helicopter pilot, happy and comfortable with life in Kuna. An Individual Ready Reservist, he thought about asking the Army to reconsider.

But maybe God has a plan for you in Iraq, said his wife, Carmen.

The day he arrived in Iraq, Chief Warrant Officer Hayes read a story about an Iraqi family in the base newspaper. The last line of the story — mentioning the family’s three dwarf children — caught his eye.

“I thought of my own daughter, who is a dwarf, and then the words of my wife came back to me: ‘Maybe God has a reason for you to go to Iraq.’”

A severe condition

Abdul Salman feared for his life and his family in Iraq. One day, counting prayer bead after prayer bead, he sent a quiet, desperate plea to the heavens: Send an angel. Send a miracle.

Salman and his wife, Wardah Al Attwani, lived with their six children about a mile from the U.S. military base in Baghdad.

Three of the Salman children had Morquio syndrome, a type of dwarfism in which their bodies are missing an enzyme that processes carbohydrates, so the food they eat is slowly killing them. It causes abnormal development of bones and a bell-shaped chest; their joints are hypermobile and their legs are bowed.

The bones of their spinal columns are flattened and their heads are held in place just by muscles. This is the most dangerous symptom. They needed a spinal fusion to prevent irreversible spinal cord injury — and paralysis.

None of these surgeries could be done in Iraq. The children’s future as dwarfs in Iraq was quite bleak.

Salman worked as hard as he could to provide for his family. He and his nephew were general laborers on the U.S. base. But then, they were targeted for death when they refused to help kill Americans. His nephew was killed.

That’s when Salman issued his desperate prayers.

And, Hayes says, “One day in October, the Army decided to call this old guy. Me.”

‘I had to help this family’

Hayes is father to six children, a boy and five girls. His youngest, Corina, is a bright, outgoing, home-schooled eighth-grader. She is also a dwarf. When Hayes read the story about the Salman family, he sought out the reporter and arranged to visit.

Saja (pronounced SAGE-uh) Farhan, then 12, was sweet, loving and wise beyond her years — the light of her family. She cradled her head in her shoulders, couldn’t walk and desperately needed surgery.

So did Ali, 9, a 28-inch-tall goodwill ambassador with an impish grin. Baraa was 7, shy and observant. The younger two still could walk, but they were missing hip sockets, so it was difficult. It was a matter of time until the condition ravaged their bodies further.

For Hayes, the connection was immediate.

“I picked up Saja, put her on my lap and told her through an interpreter that I had a daughter with dwarfism. Saja was so happy, she asked if she could give me a kiss. Then all the children gathered around me and kissed me.

“I knew then and there I had to help this family.”

What were the odds?

Russell Hayes’ commander in Iraq, Col. Ken Schecter from New Jersey, also had a son with dwarfism. What were the odds, Hayes marveled, that both men would be brought to Iraq at the same time, to the same place, in the same unit?

With the help of Schecter and others, Hayes started the process to bring the Salmans to the United States on a special immigration visa. It was a herculean a task; Hayes had to sign up for a second tour in Iraq before all the paperwork was processed and approved.

As Hayes and Salman tell the story, miracle after miracle fell into place, the answers to Salman’s prayers. Visas were approved, and the family arrived in Idaho in July 2009.

They were buoyed by the momentum, the support, the donations and the amazing coincidences, such as finding a house to rent right next door to the Hayeses in Kuna.

“In getting the family over here, my wife and I spent everything we had. We didn’t know how we were going to get Saja her operation,” Hayes says.

“Miracle after miracle had happened to get them here.”

So Hayes decided: “I’m leaving it in God’s hands.”

A life of terror and heartbreak

In his youth, Salman was a national soccer hero, kicking a game-winning goal in an Iraq championship game.

When he was 22, he was conscripted into the military. In the war with Iran, a mortar blew away part of his skull and sprayed him with shrapnel. Most of his friends died; he wasn’t expected to live. Doctors patched him up and sent him home to die.

The trauma of his injuries caused a stroke. He can’t hear in his left ear, has limited use of his right side and sports a lopsided grin.

It’s a miracle he’s alive. And it’s not the only one. “Coming to America is a miracle to me,” Salman says.

Salman is able to work for only short periods of time and with great difficulty, so the family has no income. When his English improves, he thinks he might like to be a barber. Medicaid, for which they are eligible because of their special visa, helps, but they have no other insurance. When Salman becomes a citizen, he can apply for disability. That is still a year and a half off.

The light goes out

In Iraq, Hayes contacted a number of television shows, hoping to generate publicity — and fundraising. Matt Roloff of “Little People, Big World” came to Iraq twice, to meet the family and to arrange surgeries to straighten Ali’s and Baraa’s legs, which helped some. But that’s been it, especially since they’ve moved to Kuna.

Donations are harder to come by. It’s expensive to live in the United States, and living expenses eat up what donations trickle in.

Hayes scraped together enough money to take Saja and the family back and forth to Salt Lake City, where, on Jan. 8, 2010, Saja finally had her operation at Primary Children’s Hospital, with donations from the Shriners.

But on Jan. 29, 2010, Saja slipped quietly away, from complications of being nearly quadriplegic. She was barely 14. The light that had illuminated the extended family went out.

Hayes and Salman were with her, Hayes holding her hand when she died.

“It was like losing one of my own children,” Hayes says. “So many good things had happened to that point, I had not expected anything to change.”

Hayes still treasures the photo of Saja giving him a kiss the day they met in Iraq.

“I wanted her to have what my daughter had,” Hayes says. “(Saja) never asked for anything except love and attention.”

‘We learn from this’

Although heartbroken, Hayes knew he had to support his two families, emotionally and financially. He returned to work as an air ambulance pilot, commuting between Kuna and Texas to make ends meet.

He won’t talk about figures but acknowledges the family’s bank account ends up at zero every month.

“I fell in love with Saja. I knew I had to help them somehow. I didn’t know it would be this huge. I am overwhelmed,” he says.

“Saja was really my inspiration. Now, I’m scared to death of losing Ali and Baraa. But (still), I pray every night for a miracle. ...

“Maybe we learn from this that things that are worth it are hard. If it was easy, it wouldn’t be a challenge.”

Running out of options

Today, Ali is 12, a tiny, gregarious, irrepressible sixth-grader, grinning from ear to ear and brimming with optimism.

“I like America,” he says. “Because it’s nice. The people are nice.”

When he’s asked about his height, “I say, ‘That’s what I was born with.’ ”

Ali’s sister, 10-year-old Baraa, is just the opposite: quiet and studious. Her smile lights her face.

Ali has asthma. Baraa has a leaky heart valve and gets sick frequently. Health issues aside, though, they’re normal kids. They like to play outside, pedal their toy cars, watch TV, shop.

“Sometimes you get tired and you can’t walk, you can’t move,” Ali says. “Somebody have to pick you up. ... Somebody have to not play with you too hard.”

Children born in the United States with Morquio syndrome don’t go through what Ali and Baraa go through. Americans get diagnosed early and treated.

But today, it’s a race against time. Because their heads are held in place by muscle, not their spines, every day there is an increasing chance that the base of the skull will bruise the spinal column. If that happens enough, Ali and Baraa will become quadriplegics. Then there will be no options.

Already, Baraa is getting weaker. A specialist in Delaware has agreed to donate surgery that will stabilize their necks, but the medical hardware alone is $100,000 per child — plus months in Delaware recovering.

Mother’s helper

For as long as she can remember, 13-year-old Dhuha — who is not a dwarf — has taken care of her brothers and sisters. In Iraq, she would carry Saja to school. In Kuna, she helps her mother with 4-year-old Tabarak, 2-year-old Hussein and month-old newborn Abdullah, as well as with Ali and Baraa.

She’s the family translator. She’s thrilled to be in ninth grade. She’s been student of the month and on the honor roll at Kuna Middle School. She wants to be a doctor.

But Dhuha worries about her father’s health. She worries about the operations her siblings need. She worries about who will care for the children when their parents are gone.

“I would hope (the operations can come) soon,” she says. “(But) fear comes to mind.”

The test of faith

Hayes is awed by what this one family has had to endure.

“They have been tested,” he says. “For those that have been more blessed, our test is to see if we’ll step up and help those less fortunate.

“It is amazing how much (hardship) has happened to one family. I love them. They love me. They just feel like part of the family now.”

Salman and Al Attwani still believe in miracles. Sitting in their living room, which is not in Iraq, is proof enough. Plus, in America, people don’t make fun of their children. Their children are safe, they’re in school. They can dream for their kids.

They call Hayes “Abu Danny.” In Arabic, it means “father of Danny” — Hayes’ one son in his family of daughters.

“Abu Danny very good man,” Salman says. “I feel like he’s my real brother.”

“America should be very proud,” his wife says of Hayes.

After an afternoon of playing with the children, Hayes gets ready to make the trip across the yard in Kuna to his other home.

“Love you,” he calls out as he walks out the door.

“Love you, too,” little Ali calls after him.

Katherine Jones: 377-6414