FROM THE moment their son was born, Mohammad and Alia Alhazmi knew something was wrong. He was too tiny. He needed a blood transfusion. Just one week into life, he had to have heart surgery.
Doctors in Saudi Arabia, the Alhazmis’ native land, suspected that the infant had Diamond Blackfan Anemia, a rare genetic condition that prevents the body from making red blood cells. But they couldn’t say for sure. They didn’t have access to the right kind of tests.
Like the parents of sick kids everywhere, Mohammad and Alia vowed to do whatever it took to cure their son. They learned that Diamond Blackfan Anemia was discovered in 1938, at Boston Children’s Hospital, one of the world’s premier research centers on the disease. The Alhazmis began a quiet, quixotic campaign to bring their son to Boston. Why were they so optimistic that America could save their son?
“Everything is possible for the American people,” Mohammad told me, a smile forming over his salt-and-pepper beard.
Saudi Arabia, a kingdom whose oil wealth funds cradle-to-grave health services, routinely brings its citizens to US hospitals. The problem is getting your name on the list.
“You have to know a friend in the government or a prince or rich people,” Mohammad said.
Mohammad, a manager at an engineering firm, didn’t know anyone like that. But he started writing letters to the king anyway. He wrote to the royal family and the health ministry. When his daughter was born in 2004 with the same symptoms, he grew even more desperate to get to Boston.
Nine years went by, marked by frequent trips to the hospital for blood transfusions. Finally, Mohammad invited a journalist to write about his children’s illness in a Saudi newspaper. The article quoted doctors insisting that the kids needed treatment in the United States. After that, the Saudi government agreed to send the family to Boston.
So one year ago, Mohammad left his job, sold the house, and packed his family onto a plane. They settled in a modest apartment in Quincy. Abdulallah, 11, is a fifth-grader at Squantum Elementary School. His little sister Almas, 9, is in the third grade.
This past year has been full of difficult news. Doctors in Boston confirmed that Abdulallah has Diamond Blackfan Anemia, but also another rare genetic condition called Noonan’s Syndrome. (He is believed to be the ninth person in the world to be diagnosed with both.)
Doctors have told the Alhazmis that a stem cell transplant is the only hope for their children to produce enough red blood cells on their own. But finding a suitable donor is an uphill battle. Stranger matches can be risky, and in order to get a sibling match, the Alhazmis must have another child.
Then, last month, came the biggest obstacle of all: The Saudi government sent a letter announcing that treatment would be terminated in a matter of weeks.
“This decision is final,” the letter states. “We highly recommend your return to Saudi Arabia with our best wishes and prayers for God to cure your kids.”
Maybe their case was considered too hopeless. Or maybe the family lacked sufficient political connections.
Despite the letter, they have no plans to leave. They are trying to appeal the decision with letters from doctors, lawyers, even the school principal. One letter, from Dr. Philippa Sprinz, tells the Saudi government that “it is likely that Almas and Abdulallah will eventually die of DBA if they do not access cutting-edge treatments that are available in Boston.”
“My heart goes out to them,” said Dawn Baumgardner, executive director of the Diamond Blackfan Anemia Foundation. “To be sitting in a room with world-renowned clinicians and researchers, finally getting some concrete information, and then to be told you have to leave it and go home, I can’t imagine that.”
The future of this family has never been more uncertain. Their visitor visas will soon expire. They can’t re-register their car. They can’t afford the rent, not to mention the blood transfusions their children need to survive. But Mohammad and Alia remain stubbornly optimistic. Their faith that their children will one day be healthy rests on their belief that miracles happen here in America.
“We lost everything to come here,” Alia said. “We won’t go back until we make a transplant.”
They fought too hard to get to the medical promised land to turn back now.Farah Stockman can be reached at email@example.com. Follow her on Twitter @fstockman.