No baby should be hooked up to a ventilator and a feeding tube, have a tracheotomy on his throat, and be scarcely able to move or talk. Mohammed is 15 months old, and instead of toddling and babbling, he is confined to a hospital bed in his family’s cramped Weymouth apartment.
Mohammed was born with spinal muscular atrophy, a fatal disease that attacks the muscles and nerves. How he got it - and how he got here - is really his father’s story.
His dad, Al Alfroury, is an American citizen who moved to Boston from Iraq nearly 20 years ago, and has since then worked, paid taxes, and voted. With his mother, six sisters, and two brothers in Iraq, Alfroury made frequent trips back and forth. On one of them, he married his sweetheart. He and his wife have a 4-year-old daughter, who is, thankfully, healthy. For years, Alfroury struggled with immigration and Homeland Security officials to bring his wife and children here.
“For every document they requested, it took me six months to get it. I’d send it, and they wouldn’t accept it,’’ says Alfroury, who is 40.
He was repeatedly denied, with questions about why he was going to Iraq so often. The answer, he says, is simple: to see his family. “I wouldn’t have gone if they had let my family come here,’’ he says, adding that his son and daughter are American citizens. With the help of the late Senator Edward Kennedy’s office, former US representative William Delahunt, and other Massachusetts politicians, he made some headway.
To fetch his ill son, who was in Iraq with inadequate medical care - many of the hospitals have little equipment and electricity - Alfroury had to twice take the sick baby to the American Embassy in Baghdad to get a saliva swab for a DNA test, send it to the United States, and wait weeks until there was proof of paternity.
Last April, he finally got permission to bring Mohammed here for medical treatment. In July, his wife, daughter, and disabled mother followed.
Alfroury, who lived in Marshfield and worked as a barber, spent thousands of dollars on the lengthy process. He didn’t have the money to pay for his family’s air tickets, so the Jonathan Rizzo Memorial Foundation in Kingston provided them.
The family of five is living in a two-bedroom apartment. One bedroom is filled with the baby’s medical equipment, and the other is shared by the couple, their daughter, and his elderly mother. None speak English except Alfroury.
As relieved as he is to have his family here, Alfroury worries, mostly about the baby, who can no longer speak. “He had a beautiful voice,’’ he says, leaning over so that the two are nose to nose.
As his father smooths his hair, kisses his hands, and talks sweet nonsense to him, Mohammed responds with wide eyes and a big grin. When his father leaves momentarily, the baby’s face clouds over.
When he brought him home from a long stay in Children’s Hospital Boston, Alfroury could not figure out why his son was so sad. He finally reasoned that Mohammed missed the hospital television, the only form of entertainment for a bedridden baby.
So he borrowed money, bought a small flat-screen from Walmart, and built a pedestal and wall panel so that the TV is close enough to Mohammed’s face.
Two years ago, Alfroury and his wife lost another baby, a girl, at three months, to spinal muscular atrophy. The disease is genetic, and Alfroury says they never would have had another baby had they known that she suffered from the condition. But she was misdiagnosed in Iraq; only later, when Mohammed was diagnosed with the disease, did Boston doctors conclude, from medical records, that their baby girl had died from it.
Though Mitt Romney may be distancing himself from the universal health care plan he oversaw in Massachusetts, Alfroury heaps praise on him for it. His family is on MassHealth, the state insurance coverage for low-income residents.
Besides Mohammed, Alfroury’s other big worry is money. Simply put, he has none except for Social Security disability for the baby. “And help from friends who have stood by me,’’ he adds.
When he brought the baby home, alone, from Iraq, Alfroury had to quit his hair-cutting job to become a full-time caregiver. The tracheotomy tube must be suctioned every 15 minutes, and cleaned and changed every day, a chore that takes at least two people. Though his wife does much caregiving, some of it requires more hands.
Luckily, Alfroury found his way to Brockton Area Multi Services Inc., a nonprofit social services agency. Its Family Support Center in Hanover helped connect him to medical and social services, find furniture, and get him settled.
“They did everything; they helped me fill out applications, helped me with Children’s Hospital, helped me organize everything in the apartment,’’ he says.
Alfroury cannot say enough about the generosity of the American people. “I love this country and am very grateful. I have friends. I learned English here. I love my life here.’’
But life is far from ideal. The family needs space. He needs to find a job with flexible hours that will allow for family emergencies. His daughter needs to get out of the cramped quarters and be with other children, but Alfroury has been unable to find a preschool for her.
Mary Ann Mills-Lassiter, executive director of the Family Support Center, has seen how tough it is. “My wish is that we could find a landlord with a three-bedroom apartment for the family, who would do a rental based on income,’’ she says. “He is so dedicated to his family.’’
Alfroury used to paint some, and he has a website, www.enigmafineart.com. He didn’t want me to put this in the newspaper, as he thought readers might think he was using his sick child to sell pictures.
I told him it was the reverse; that he should use his pictures to support his sick child. And four others.Globe columnist Bella English lives in Milton. She can be reached at firstname.lastname@example.org.