Written by Denise Cardell, Shavertown, PA

Jeff was diagnosed at age 9 with epilepsy. He was having seizures for at least six months before but I was told he was just having behavioral problems and aside from staring at home sometimes, I just didn’t think much of it. When we went to the neurologist who diagnosed Jeff, I really wasn’t upset. I just thought he’d take some medications and he’d be fine… 40 years later and its been never ending seizures. I wasn’t told about Lennox-Gastaut syndrome (LGS) until maybe six years ago. It was always “intractable seizure disorder.” I didn’t connect any name to it and we had been to many many doctors. It was a surprise to me when I finally had a diagnosis and a label to put to it and the opportunity to research more about it.

I started a journal in the summer of 2020. Jeff was in a nursing home and in lockdown and it was therapeutic for me to keep him in my thoughts. Every day I’d write more and more and then my grandson said- “This is a book grandma!” He told me to put some funny things in it about Jeff like when he almost flushed the kitten down the toilet when he was two! (True story, but I got Inky in time!) So then it became my quest to write a book so others were aware of how someone lives with LGS and how it affects their lives and their families.

Jeff in July of 2019 fell at his assisted living facility. It’s not unusual for him to fall and the staff called me and I met him at the ER. This was not a usual ER visit though. I couldn’t see Jeff for three hours as they were working on him in trauma. He was intubated and went to the ICU. There he stayed in medically induced comas for 3 weeks. At that point they discussed palliative care for him. But then they spoke to Jefferson Hospital in Philadelphia where Jeff had an epileptologist, and it was decided to live flight him to their epilepsy ICU. They worked for a week with medications until they stabilized Jeff enough to send him to a skilled nursing home for extensive rehabilitation. That was September 4, 2019. He was very ill with bacterial infections and as he had a trach put in at the ICU he needed to learn to eat and talk with it. His rehabilitation was just beginning, and he was slowly moving his arms more and beginning to stand for 20 seconds when COVID-19 hit in March 2020. Therapies were shut down. Visiting was shut down and sadly Jeff regressed physically. Two and a half years later and he’s still in a nursing home, but walking or standing is not possible. He lost all his muscle in his legs over the time period.

Jeff was always a very happy social person and now he’s a shell of the old Jeff. I miss that Jeff so much. He will still smile, I don’t know how, but I love his smile and cherish every time I see him.
In January 2022 Jeff got COVID-19. He had extreme fatigue and it has set him back to the point of now just surviving. He sleeps mostly, rarely talks, and mostly nods. He sleeps through meals sometimes and is fed by the feeding tube placed in 2019.

My heart goes out to everyone who has to live with a child with LGS. It robs them all of a normal life and it’s heartbreaking…

I feel blessed I had that little boy for 8 years and am thankful for those years every day.

I hope whoever may read my book can see they are not alone in this struggle. Jeff joined a lot of different sports. He didn’t always play but what mattered was being on a team!