COON RAPIDS, Minn. — A Coon Rapids family just returned from a “bucket list” road trip adventure to the Atlantic Ocean to bring joy to their 6-year-old son, who suffers from a rare seizure disorder.
Kari and Kirk Olavson planned the 2,800-mile, two-week journey after they recently found out their son Jacob’s health was in further decline.
Jacob Olavson, 6, starting having severe seizures just days after he was born. By six months old, his parents discovered the seizures had caused significant developmental delays.
Today, Jacob is in palliative care, spending most of his time in a hospital bed in his bedroom or in a wheelchair. He can’t speak or walk, struggles with his vision, and receives help breathing with a trach tube.
Only recently have geneticists come up with a diagnosis called Early infantile epileptic encephalopathy-17, a seizure disorder affecting a handful of people in the world.
“It’s hard to see that because the …