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Photo illustration of three children against a blue background. -- health coverage from STAT — The Pashai children (from left): Abubakar, Mohammad, and Sufyan. Illustration: STAT; Photo Courtesy

On a sweltering day in August 2021, as the engines of a hulking C-17 cargo plane drowned out pops of gunfire and Taliban rocket explosions around them, the young Afghan couple looked down at their 4-month-old son, Mohammad, and felt a shuddering wave of relief. But as the plane lifted above the dusty peaks that hug Kabul like a fortress of sandstone and schist, that feeling grew heavy with grief — for the parents and siblings they were leaving behind, and for Afghanistan, the only home they’d ever known. They did not know when, if ever, they would set foot there again.

Three years later, the Pashais are fearing for their family’s lives once again. This time the existential threat they face isn’t war, but a pair of faulty genes, silently passed down through their families for generations before detonating on American soil.

In October, Mohammad was diagnosed with a rare inherited disorder — metachromatic leukodystrophy. Genetic tests revealed his youngest brother, Sufyan, though he’s showing no symptoms, also has the disease. There’s a potential cure for Sufyan, a company offering it free of charge, and a team of doctors in Minnesota ready to administer it. But the Medicaid program in the Pashais’ new home state of Texas has said it won’t cover the cost of even an initial consult to confirm he’s a good candidate for the treatment.

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