You can’t describe Sophie Cowin without more than a mention of the epilepsy that relentlessly threatens her life.
But you also can’t define the 17-year-old solely by her seizures.
“Sophie is just the most beautiful person,” says her mother Katherine. “She is brilliant. She is an incredibly creative person. Loves drama and the arts. She has a vocabulary that has most adults looking for a dictionary.”
The eldest of three children of Katherine and Michael Cowin of British Columbia, Sophie is also an ecologist and ‘animal warrior.’ She loves everything marine. I would swear she is a fish,” her mother says with a laugh.
“She is all about saving the environment … She would be on a Greenpeace boat, saving the sharks, if she could.”
But her seizures, persistent yet unpredictable, make that impossible.
Sophie’s struggle and courage inspired her grandparents – Western Chancellor Jack Cowin, BA’64, LLD’00, and Sharon Cowin, BA’64 – to donate $2.5-million to epilepsy research at Western.
The gift, announced Monday, establishes the Jack Cowin Chair in Epilepsy Research. Matched dollar-for-dollar by the university, it is a catalyst to help prepare Western to become North America’s pre-eminent centre in epilepsy research and surgery, and to benefit hundreds of epilepsy patients a year.
Patients like Sophie.
Sophie Cowin’s multiple surgeries and her close calls with death are an intrinsic, even though unwelcome, part of who she is.
“She doesn’t get to go to school. She doesn’t get to do those things that 17-year-olds do because epilepsy has taken that from her.”
Sophie’s first seizure took place the afternoon of Halloween, 2009, when Sophie was eight; she was diagnosed with epilepsy soon after she turned nine.
Her seizures are multifocal, originating in several parts of her brain. Mostly resistant to medication they are protracted, life-threatening and as stubborn as she is.
“Even when Sophie has been on life support, that has just strengthened our resolve (to find a cure),” said Katherine Cowin.
Her family’s relentless search for help saw them visit experts at leading medical centres across North America, until they found answers at Western University’s Epilepsy Program. The largest of its kind in Canada, the program conducts leading-edge research and attracts Fellows from around the world.
Western researchers were able to identify the originating sites of Sophie’s epilepsy, and share that knowledge with surgical experts in New York.
A little more than a year ago, surgeons in New York implanted a cranial pacemaker, a device intended to interrupt the electrical misfires deep in her brain.
Where her medication doesn’t stop the seizures, the pacemaker is intended to control them. Still, it’s not enough; and Sophie continues to have seizures.
Epilepsy affects one in every 100 Canadians, and almost one-third of those don’t respond to medication.
It would be “wonderful” and “ideal” if various research centres were more adept at sharing their resources, newest studies and current databases, Katherine says.
Thanks to the Cowins’ gift, that fervent hope for more collaboration between and among researchers is now closer to fruition in London.
Dr. Jorge Burneo, is the inaugural chairholder. Burneo, also a Professor in Clinical Neurological Sciences and Epidemiology and Biostatistics at Schulich, and co-Director of the Epilepsy Program at Schulich and London Health Sciences Centre, sees the potential for far more collaboration through the newly established position.
“The creation of this research chair in epilepsy at Western will help attract more individuals to work here in London, and allow us to enhance the research and allow us to build partnerships to enhance our clinical care for patients,” he said.
It’s good news for patients like Sophie.
Sophie isn’t well enough to travel much, except for regular trips to New York where specialists continue to treat her.
There, she enjoys visiting the Metropolitan Museum of Art, where she absorbs an encyclopedic understanding of Greek and Roman mythology and adds to her burgeoning book collection, between doctor visits.
“Life is about hospitals. She would love to play cello more, go to university and, most of all, to live independently.”
It’s frustrating, exhausting, frightening. But not enough that they are ever tempted to yield an inch to despair. “Never. She is too cute. Even when Sophie has been on life support, that has just strengthened our resolve (to find a cure),” Katherine says.
“She is probably the kindest person I know and, regardless of what she’s been through, she says, ‘it’s ok.’ ”
But it’s not ok – not for her or for the thousands of other families who understand Sophie’s story from their own homes and hospital beds – and the new Jack Cowin Chair in Epilepsy Research will help challenge that medical reality.
Within the community of parents with children who have life-threatening conditions, Katherine recalls one parent saying, ‘We may never win the war on epilepsy. We just win the battles.’ That’s not enough for me. I want to win the battles and I want to win the war,” Katherine insists.
“We always, always, always have hope that in Sophie’s lifetime we will find a cure.”
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