Trevor’s doctors said he needed a “miracle drug” known as Acthar. But between Trevor’s birth and diagnosis, the price of the drug had shot up from $1,600 a vial to more than $23,000 a vial — making him one of the first children caught up in one of medicine’s most controversial price hikes.

After the initial diagnosis, the Foltzes wrestled with their insurance company for days to get Trevor treated with Acthar. Eventually, the treatment was fully covered, at a cost of more than $125,000. And the drug worked. The tremors stopped.

But more than a year later, on that day in the backyard, the seizures had returned. Another round of treatment was in order.

Again, the Foltzes ran into red tape. The insurer was balking at spending another $125,000, and Trevor’s parents worried whether he would get the precious vials of medicine needed to give him a shot at a normal life.