Jake Chalkey has defied doctors’ expectations.
Born with a brain malformation, Jake wasn’t supposed to live past 2 years old.
He suffered from life-threatening seizures, which would be his downfall, doctors said, and it took years for medical professionals to formally diagnose the young boy with a condition they didn’t even have a name for.
Finally, when he was between 10 and 11 years old, a doctor at the University of Chicago nailed down a diagnosis—bilateral periventricular heterotopias with hippocampal malformation and cerebellar hypoplasia.
Jake, who lives with his family in Streator, Illinois, is only one of 18 in the world with this brain malformation, and he is the oldest living person with this disorder.
To control his seizures, Jake takes a drug called Keppra, which cost his mother, Christine, and father, Gary, $1,200 if they paid out of pocket. Today, as doctors have upped Jake’s dosages, they’d pay more …
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