150 Years Stronger Patient Story Jackie & Jackson

A Brother's Devastating Diagnosis Inspires his Sister's Studies

150 Years Stronger Patient Story Jackie & Jackson

Anti-NMDAR Encephalitis is a devastating and rare neurological condition. Jackie became very familiar with its impact after her little brother, Jackson, was diagnosed six years ago.

He started having seizures during his ninth birthday party. Jackie, then 11, suddenly went from having a healthy, fun younger brother to one who couldn’t walk, talk or eat on his own. She lived with friends for two months while her parents stayed with him at Children’s National Hospital.

Jackson was unresponsive for five weeks and missed nearly two years of school as he gradually healed. He had to re-learn everything from swallowing to reading. Helping her brother throughout his recovery inspired Jackie, now 16, to apply for an internship with our neuro-immunology team in 2019. “She used the internship to turn something very tough for our family into something very positive,” says her mom, Jennifer.

Jackie loved meeting patients, spending time in the lab and learning from the team. She got the chance to support children with the same disease as her brother. “I could relate on a personal level,” she says. “It made me sad to see family members scared for their sick children or siblings, but I was able to reassure them with the same hope that the staff at Children’s National brought to my family years ago.”

Jackson, now 15, is thriving. He’s doing well at school and back to playing basketball, baseball and the other sports he loves. He’s down to one therapy appointment a week and his brain continues to heal.

Jackie, 17, is interested in becoming a neurologist. “Her interest in the field is like an extension of Jackson’s healing,” says Jennifer. “His illness changed the whole dynamic of our family. Now we’ve got something awesome to look forward to. Children’s National has given us incredible care and support along our journey.”

 

A young patient at Children's National Hospital.

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A young patient at Children's National Hospital.