First came seizures. Then Conner Beish started losing words. Before long, the four-year-old was struggling to walk. It was as if he were aging prematurely. His doctors couldn’t solve the medical mystery of the toddler who seemed to have dementia. Then a group of enterprising scientists, a few longhaired dachshunds, and a risky surgery gave the Beish family hope. This is a story about Batten disease, a rare, fatal condition, and the challenges it has inflicted upon one American family.
In the hands of Amitha Kalaichandran, a resident physician and health journalist, it is a wrenching domestic drama about the power and limitations of love. But Kalaichandran elevates and broadens the narrative such that it also encompasses the obstacles that all families affected by rare diseases face: a lack of investment from Big Pharma in the research required to unravel complex genetic conditions, the glacial pace of government drug approval, and the risk of finding one’s sick child at the mercy of an inadequate health-insurance plan.
Making a scientific story humane is no easy task, but Kalaichandran succeeds, aided by the brilliant photography of Baltimore-based artist and activist Shan Wallace. The Atavist Magazine published the feature when tax reform had just been rushed through the GOP-controlled Congress. Buried in the new law was a 50 percent cut to the Orphan Drug Tax Credit, one the few incentives that have spurred drug companies to help children like Conner Beish in recent decades. Simultaneously, Congress offered only a short-term funding patch for the Children’s Health Insurance Program (CHIP), which expands and supplements Medicaid for some nine million kids whose families otherwise don’t qualify. Health-policy experts worry that the CHIP lapse, if it becomes permanent, could hurt poor families with children suffering from uncommon illnesses.
As the Beish family, in which the father is a truck driver and the mother is a stay-at-home caregiver, know all too well, rare diseases do not discriminate on the basis of class. “I wish [legislators] could see children like Conner and the impact these policies could have,” Mrs. Beish told Kalaichandran, who then wrote the little boy’s story for precisely that reason.