Shayne Turpin experienced his first seizure at the age of seven months. His parents were told it was a febrile seizure — an isolated event — that would probably not happen again. But it did, over and over again.
Jessica Canino was developing normally until her fourth month of life, when she suffered her first grand mal seizure three hours after an immunization. Two weeks later, she had another seizure — this one lasting more than an hour — and was airlifted to a hospital where she spent five days on life support. Now 28, Jessica is still dealing with the challenges stemming from her condition.
At the age of 4, Jayden David was popping 22 pills a day, but that didn’t prevent the myoclonic and grand mal seizures that lasted an hour and a half every day. Nor could the pills stop him from screaming day and night. But that changed once his father started giving the boy cannabidiol (CBD) oil, a derivative of the marijuana plant. Jayden, now 12, is down to less than one pill a day, and is seizure-free.
These young people — Shayne, Jessica, and Jayden — live in southern California, and all have Dravet syndrome. They are featured, along with 37 others, in an upcoming book about epilepsy, which was commissioned by the nonprofit organization Sofie’s Journey.
The book, tentatively titled “40 Epilepsy Stories,” is a compilation of vignettes written by New York-based writer Amyliz Pera, and photographed by award-winning photographer Karen Haberberg.
“The concept of the book is to raise awareness of the different medical treatments that people with epilepsy can access, and to show the world that you can have epilepsy and still lead a fulfilling life,” Haberberg told Dravet Syndrome News during a visit earlier this month to Israel.
“While I was doing a shoot, someone had a seizure. I stopped shooting,” she said. “But they urged me to keep taking pictures, because that chaos is part of it. That is the real you.”
Shooting at Epilepsy Awareness Day
Haberberg is no stranger to rare diseases. Last year, she produced “An Ordinary Day,” a book about 27 families with children who have rare genetic diseases. Proceeds from the sale of that hardcover volume, which retails for $45, fund research on treatments for a range of disorders ranging from Angelman syndrome to Duchenne muscular dystrophy.
This second book, on epilepsy, will be completed sometime in mid-March, with eventual distribution to doctors’ offices. It’s being funded by Brad and Candy Levy, a Los Angeles couple who founded Sofie’s Journey after their daughter, Sofie, was diagnosed with epilepsy.
Brad Levy invited Haberberg to his organization’s annual Epilepsy Awareness Day, held last year in early November at Disneyland in Anaheim, California. The three-day event, now in its sixth year, attracted 3,700 people and 140 vendors.
“We met Karen at a rare disease conference, saw her book and could tell she has an amazing heart,” Levy said. “We decided to capture stories of patients living with epilepsy to show people that if you keep searching for answers, you will get help.”
Some of the event participants came from as far away as Australia, France, Denmark, Vietnam, and China. And the event is where Haberberg did most of her photography for the upcoming book.
“I shoot these photos against a white, seamless background,” said Haberberg. “First, I interview these families. They tell me their stories, and I try to pull out something from their story that will reflect in their image. So, for example, I might have a picture of someone who recently had brain surgery, and a portion of their brain was removed, and they weren’t able to walk. I try to show, if I can, something that demonstrates who they are as a person.”
Levy, who conducts EEG patient monitoring for a living, said once the book is published in October, his group plans to print 1,000 hardcover copies.
“We’ll ship them to any epilepsy center that agrees by phone to place it in their waiting room,” Levy said, estimating it will retail for $49. “All the proceeds will go to printing more copies.”
Haberberg, who studied at New York University and the International Center for Photography, also did a six-month stint at Israel’s Tel Aviv University. She now runs her own portrait business in New York City, while teaching photography classes at NYU, the 92Y, and the Jewish Community Center of Manhattan.
She became involved with the rare-disease community after her own family’s loss.
“My parents had a son with Tay-Sachs who died before I was born,” she said. “My mother was incredibly involved in the Tay-Sachs Foundation. More recently, my best friend had a child with Angelman syndrome, and I felt like I wanted to do something to raise awareness of what these individuals go through.”