"Ethan has a rare genetic disorder Syngap1 which, among other things, causes a kind of seizure that can make him drop to the ground without warning. "Everything just kind of shorts out for a moment," Peterson says. "And the danger of that and I've seen this is him falling on hardwood floors, concrete, off of stairs, like all of these things." She says he's gotten hurt and she's had to rush him to the emergency room."
"Ethan takes a medicine called Epidiolex that prevents these seizures. But last holiday season, a thief stole it off the family's front porch in Charlotte, N.C. Peterson remembers finding the empty box and then checking her Ring doorbell camera footage. "I see this guy walking off and I am just livid," she says. Then, she had to figure out how to get this medicine worth $1,800 replaced so her son didn't miss a dose."
Ethan, an eight-year-old who is nonverbal, has Syngap1, a rare genetic disorder that causes seizure events which can make him suddenly drop to the ground. His seizures are prevented by a prescription medication, Epidiolex. A thief stole a package containing the medication from the family's front porch in Charlotte, N.C., forcing urgent efforts to replace an $1,800 prescription to avoid missed doses. December is the busiest month for package deliveries and porch piracy. Mail-order medication can be targeted by thieves. Package delivery involves many people and companies, complicating tracking and analysis of theft.
Read at www.npr.org
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