Our youngest daughter Jacquelyn was born with epilepsy. Though she did not survive her second year, much of our experience in caring for her, including her reactions to various drugs and diets is very similar to the child profiled in this article in the New York Times:
“The first thing you notice about 12-year-old Nora Leitner is the dark circles under her eyes. They stand in stark contrast to the rest of her appearance; at a glance she might be any petite, pretty tween girl, with her blond ponytail, elfin frame and thousand-watt smile. But the circles tell a different story: Nora looks as if she hasn’t slept in a month.
In a sense, she hasn’t. Nora has epilepsy, and as with 30 percent of those with the disorder, her seizures are not controlled by existing treatments.”
For what it’s worth, I’d consider it a personal favor to me if you’d take the time to read the whole article. Jacquelyn’s life, though short, was a great gift to her mother and me. There are many other children who suffer from this disease. Perhaps, if we remember that they are out there, it will lead to the first few steps in working our way through to finding a cure.
Read the rest here: Battling Epilepsy, and Its Stigma – New York Times
I’m so sorry about your daughter, Fr. Nick. I will definitely read the article you link here.
Hey Nick
Jacquie came to mind last week. I had the privilege of conducting the funeral of seven month old Evan, the son of two of my parishioners at St Paul’s. Evan was born with chromosome 22 deletion syndrome. In seven months he has spent half of his life in Children’s Hospital in Pgh, had undergone 6 major medical procedures including two open heart surgeries and finally died on February 10. The family had no idea of what to do with little Evan so I remembered Karen and Nick and Jacquie and the Columbarium at Trinity Cathedral. As it is the couple has purchased three niches and next Saturday Bishop Henry and I will conduct the Committal of Evan and a service of Holy Communion at the Cathedral for the family. Thanks Nick for leading the way for us.
BTW, I did read the entire article. Heartbreaking but hopeful
Thanks David and bls for your kind notes.
David – I’ll keep Evan and his parents in my prayers. You probably already know of this, but if Evan has any siblings, you could recommend that they participate in the program run by The Center for Grieving Children downtown. (It’s the program started in part by Fred Rogers.) It was incredibly helpful to Jackie’s sister (and to her parents as well) and helped walk all of us through the grieving process.
Our daughter has epilepsy. Luckily medication controls it. It was amazing to me how people reacted as she was growing up (she is now 39) – some Episcopal priest even tried to “exorcise her” – she told him he was nuts and walked away.
Thanks for drawing my attention to the article and for speaking so powerfully about Jacquelyne. It reminds me once again to be so thankful and aware of the frailty of our lives, to give thanks for children like Jacquelyne and Christopher, the son of a friend of mine, who wasn’t expected to survive pregnancy and yet touched the lives of so many people for every one of his 18 months.
Hi again Vicar
I had already read the article in the hard copy NYT, but from a different vantage point, as my father has epilepsy. His seizures have never been totally controlled and it is possible that after 50 years of anticonvulsants, his current cognition is affected, but those anticonvulsants certainly controlled his condition to the point where he had a life. I hope young Nora’s parents reconsider their view of her medications.
My mother always hated Pat Boone. Not only did her musical tastes run more to Screamin Jay Hawkins, but he evidently once said, way back when and based on his Biblical readings, that epileptics were demoniacal.
I wonder what the African bishops think? And if we would be asked to fast there as well?