9/10/1989 - 12/26/2023
Jille was a beautiful red-haired green-eyed baby girl. She was diagnosed with infantile spasms after having major brain surgery to remove an encapsulated cyst. The seizures did not respond to the medications available at that time. Eventually, she was diagnosed with Lennox-Gastaut Syndrome.
We kept trying to find answers which led us to Johns Hopkins Hospital in Baltimore. There she was screened for a hemispherectomy. She was not a candidate but was put on the ketogenic diet. Six months later we stopped the diet as there was no improvement. While we were there Dr John Freeman gave us the best advice we ever got. “ Never stop looking for answers “.
Jille got a VNS implant in 1999. It improved her recovery after a seizure. She started public school at 2 years of age. She was an observer and a people person. Jille was a happy child despite the continued seizures. She was an only child and we doted on her. We took her everywhere. She took us to places we never would gone to otherwise. Dollywood(Pigeon Forge) at Christmas; Disneyworld in Orlando. A bucket list trip of 8863 miles in our minivan in 2013. We saw the Pacific Ocean in June and the Atlantic Ocean in December.
Jille graduated from public school and then attended a Day Support program 5 days a week year round. She enjoyed being with her peers. It was also important to us that she be in team sports like Special Olympics Bowling and Challenger Little League Baseball.
Throughout her life her seizures were not well controlled. She has been on every seizure medication available for LGS. They were particularly hard on her throat which led to swallowing issues.
Jille was a happy young woman with a beautiful smile and a personality to match. She was non verbal but communicated with eye gaze and body language.
We are truly grateful to have had Jille in our life. She is greatly missed.