Hawa Hassan: Refugee wants better care for son with muscular dystrophy


A year after leaving a Kenyan refugee camp — the only home she’s ever truly known — Hawa Hassan says life for her and her children in America hasn’t been easy.

Hassan’s 9-year-old son, Haji Mada, was taking a few steps at a time while in Kenya, but he has lost the ability to walk. Only after he arrived in Austin did doctors diagnose him with a rare form of muscular dystrophy. Hassan, 30, wishes she had thicker rugs to cover the linoleum floors of her East Austin apartment so that Haji’s knees won’t hurt as much when he crawls.

“You have to feel bad because at the beginning your child used to walk and now he’s just sitting down,” says Hassan through a translator. Hassan said her brother probably had the same disorder as Haji — he was born healthy but lost the ability to walk as he aged — and he died when he was 25. Doctors are asking Hassan to prepare for the same fate for Haji, Hassan said.

Although Haji’s two sisters, Sadiya Hamadi, 11, and Fatuma Noor, 6, are already speaking to each other in English, Haji remains largely quiet.

Haji does not receive physical therapy; Hassan wakes up at 5 a.m. every day to stretch her son before she ushers all three children onto the school bus. Hassan can’t speak English well and doesn’t know how to drive. Much of her time is spent alone in her apartment. The children’s father, whom she separated from several years ago, is still in Kenya.

Hassan, who has developed a relationship with a refugee she knew from Kenya but who now lives in Houston, is pregnant with her fourth child. Doctors say if the baby is a boy, he could develop the same genetic disorder as Haji, Hassan said.

She wants to work and be able to send money back to Kenya to support her family, but she’s not ready yet to hand off her children, especially Haji, to another caretaker. The family lives off of the disability money that Haji receives — about $700 per month.

“When it’s difficult, I seek God,” says Hassan, who is Muslim.

Hassan says she doesn’t remember certain parts of her life; her caseworker says that she has likely experienced trauma. Hassan, who doesn’t know her exact birthdate other than that she was born in 1987, fled war-torn Somalia as a child. At the refugee camp in Kenya, Hassan was able to attend school for the first time, but that ended in the seventh grade. She helped her family farm foods like corn and sold things here and there at the market to make some extra money.

Although she heard from family and friends that America had more opportunities, she said she was skeptical and wanted to find out for herself. She applied and waited six years to be resettled.

Hassan says that America hasn’t been what people have said it would be, but she loves the public school system. Haji and his two sisters recently enrolled at Allison Elementary School about 20 minutes from their apartment so that he could receive better special education services. Sadiya and Fatuma are becoming fluent in English, and their favorite subject is reading.

Hassan doesn’t dismiss the possibility that she might return to school once the children are grown.

To donate to Season for Caring, click here; to read about the other Season for Caring families, go to statesman.com/seasonforcaring.



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