On the fringes of #dctech is an Iraqi immigrant who gave up everything to save his son

Earlier this fall, I broke down on the Beltway outside D.C. And AAA’s roadside assistance turned out to be an Iraqi engineer who uprooted his whole family to save his son.

It all began with a (foiled) attempt to attend Transportation Techies meetup in Arlington in October. Halfway there, my twelve-year-old sedan began lurching and I called AAA. Roadside assistance was a middle-aged man, wearing a thermal pullover and a headlamp. He had an accent but very good English. When we examined my tires, he discussed centrifugal force and wavelengths. This was no ordinary car mechanic.

I’ve been asked not to use his real name, because he hopes to rekindle his business ties in Iraq. (“If they knew what I did for work now, who would trust me with millions of dollars?” he asked, when we met later at a Starbucks in Rockville, Md.) This article will refer to him as Adam.

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Baghdad, where Adam was born. (Photo via Wikimedia Commons)

Adam was born in Baghdad, Iraq, as the son of a wealthy cement supplier. He studied civil marine engineering in the coastal city of Bazra at the Engineering College of the Gulf Academy. After graduating in 1990, he planned to go to Italy for more marine training but life had other plans.

“The war between Kuwait and Iraq happened,” Adam said of his graduation year. During the conflict, the Iraqi government barred citizens from international travel, curtailing Adam’s plans for Italy. He soon found employment working on oil tankers, but it was far from what he imagined. He worked for a couple of months and then quit.

“Oil tankers,” he said, “take you [out for] six months on the sea. You don’t see anything.”

After abandoning ship, Adam founded his own company distributing cement. “I started with buying, selling and transportation because that’s my family business. That’s my father’s business,” he said. His first contract with the government, in 1996, was for one million dollars.

“I made good money with that,” he said.

With his brother as his business partner, their cement trading business expanded into the international market in 2004.  Two years later, Adam said his company became the main cement supplier to the U.S. Embassy in Baghdad. Afterwards, he was contracted by the U.S. Army Corp of Engineers to rebuild 17 railway stations in Iraq.

“As our contractor for the refurbishment of Iraqi Republic Railway stations […] , you are a very important component of the rebuilding of the Iraqi infrastructure,” reads a letter from the U.S. government.

Meanwhile, he also began consulting on commercial real estate projects and became a real estate developer.

However, Adam would soon abandon the booming business to save his son.

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“Fifty days after he was born the symptoms started,” Adam said.

It was 2006 and Adam’s infant child was feverish and struggling with infections and an enlarged liver. These symptoms were familiar to Adam’s family. The same mysterious condition had already claimed the lives of three of he and his wife’s other children. But this time, Adam was determined to find a cure and prevent another death.

To maintain the son’s privacy, this article will refer him as Omar.

Adam told me he had to consult numerous doctors until he finally found a diagnosis through a doctor in Baghdad. This doctor showed Adam a magazine from a medical conference in Saudi Arabia. In it was a description of a rare condition, with symptoms matching Omar’s.

“He said, ‘I think your son has this,’” Adam said. “And he was right.”

Omar tested positive for a hereditary condition called chronic granulomatous disease (CGD). People affected by CGD have immune systems which cannot fight certain bacterial and fungal infections. Without medical treatments, CGD patients can develop life-threatening infections from common germs. According to CGD Society, only five people out of a million are affected by CGD. Omar’s form of OGD, involving a broken gene (p67), is even rarer: affecting one in five million people.

This rarity means the pool of doctors able to treat CGD is small. Adam found a referral through Mary Hurley, president of the Chronic Granulomatous Disease Association, who connected him with doctors at the National Institute of Health (NIH).

For Hurley, who told us she refers many people with CGD to hospitals around the world, Adam stuck out. “One thing that was unique about Adam was that he was aggressive in a good way,” Hurley wrote in an email to us. She mentioned his many attempts to find a doctor before reaching out to her, saying, “Because of this, I took a lot of action on his case – trying to get [Omar] to NIH.”

With her help, Adam flew a NIH doctor out to Turkey to examine Omar for himself. After the doctor’s inspection, NIH offered Omar free treatment as part of the Institute’s research.

NIH Clinical Research Center. (Photo from Wikipedia Commons)

In 2009, Adam traveled to the United States for the first time to bring Omar to the NIH in Bethesda. At the time, Omar was three years old.

“I stayed with him in hospital for eight months during the procedures,” Adam said. His son couldn’t express himself, so Adam took it upon himself to help him do so. The pair stayed in the Children’s Inn at NIH while Omar underwent treatment.

After eight months, treatments at NIH were successful and Adam took Omar back to the family home in Baghdad. However, the following year Omar became sick again, so Adam made a second trip with him to Bethesda. On the third visit to the NIH in 2013, the whole family relocated to Bethesda to join Adam and Omar.

“The problem with Omar is that when he breathes dust he gets pneumonia directly,” explained Adam. “One day in NIH, Omar got pneumonia and almost more than half his lung [was] eaten by germs.” Fortunately for Omar, a new type of treatment helped save his lung, otherwise doctors would have had to remove part of it to prevent the infection from spreading. Since the family’s move, Omar contracted another infection in one of his lymph nodes, which doctors did have to remove.

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Today Omar is healthy, but he remains susceptible to the same infections and must wear a mask in public. The NIH can help treat his infections, but it lacks a key ingredient to cure him – something Adam has gone to great lengths to try to change.

“Because the hospital could not solve my son’s problem I tried to solve it myself,” Adam explained. “To find a donor to give him a bone marrow transplant.”

Bone marrow mast cells. (Photo by Ed Uthman, Flickr Creative Commons)

CGD patients like Omar can be cured with bone marrow transplants. But finding a match is often easier said than done – which is why Adam tried to create one. None of his other five children being matches, Adam planned to ensure his next child could be a match.

“I signed [a contract] with one genetic center in Chicago and a fertility center in D.C. to make one child like Omar,” he said. In 2013, geneticists inspected his wife’s embryos for viable matches. On the second try, they found one embryo which could one day donate marrow Omar. Unfortunately, the fertilized embryo was later miscarried.

The only other option Adam saw was to create a donor registry in Iraq, where there’s a higher likelihood of finding a donor for Omar. However the country wouldn’t be able to guarantee the safety of registered donors.

“If I know you are a match with me, and I need a kidney, I’ll take your kidney,” Adam explained of the people who would take advantage of the service. “This is very dangerous.”

Today Adam, his wife, and five of his six children live together in the house the family rents in North Bethesda. His oldest child is now a mother and living with her husband in Iraq. Adam sometimes struggles to make ends meet but has not lost his industriousness. He told me of his many business ventures in the DMV area.

After an investment in a local restaurant turned sour, Adam founded a limited liability company. Thanks to years tinkering under car engines, Adam was able to build a towing business under that LLC. Currently he employs a family friend to assist him with the towing, and together they work as independent contractors with AAA. Adam has also used the LLC to ship over 600 secondhand iPhones from the U.S. to Dubai and Iraq – a tech trade that reportedly netted profits until ISIS left his Middle Eastern market inaccessible.

“I feel I lost my time here – because [I’m not making] millions. I’m not at my level of business,” Adam admitted. Despite this, he emphasized that helping stranded drivers like me is good work. “I like helping people.” Adam also stressed his gratitude for the doctors and nurses at NIH and the Children’s Inn.

The family has requested asylum in the U.S. and has been waiting on the decision for two years. In the meantime, Adam says his children are growing up as Americans, and their English is now better than his. Omar’s first English word was “mailbox.” The five younger children live at home in North Bethesda.

Omar, now 10 years old, is a budding computer programmer who attends a school in Bethesda and excels on his math homework. Adam says the NIH continues to search for a bone marrow donor for him.