TORONTO (CP) – Teenagers who are forced to confront the cruel reality
of a terminal illness will typically find some solace in childhood’s
usual creature comforts: an Xbox, a trip to Disneyland or a handshake
with a hockey player.
Kelly Clarke chose to visit the one man who holds her future in his
hands.
When the Make-A-Wish Foundation offered to grant her a wish, the
16-year-old Clarke, who suffers from a rare and terminal form of
adolescent epilepsy, asked to meet a Toronto doctor whose pioneering
research represents her best hope for a better life.
That wish came true Thursday after Clarke and her parents made the
4,800-kilometre journey from Kingsland, England, to Canada’s most
populous city to meet Berge Minassian, a neurologist at the Hospital
for Sick Children in Toronto.
“I wanted to find out things about my illness,” Clarke said of her
trip. “I’d like some advice, (to know) how far the research is, how
well he thinks I’m doing.”
Clarke’s odyssey began more than three years ago, when her mother and
stepfather began the difficult task of researching a rare condition
that neither they nor anyone else in the medical community seemed to
know anything about.
Doctors eventually identified Clarke’s condition as Lafora disease – a
form of epilepsy that occurs during early adolescence and is
characterized by seizures and progressive neurological degeneration.
Over the course of their Internet research, Clarke’s parents found one
name that kept popping up as a leader in the field – Minassian, a
Toronto neurologist who had successfully identified two genes used to
diagnose the disease.
When Clarke learned Make-A-Wish was prepared to help, as it does with
countless children around the world who face life-threatening
conditions, she opted to fly halfway around the world to find out what
– if anything – her future holds.
“He said there’s this much hope,” Clarke said, holding up her thumb
and index finger.
“I don’t know what the hope is – a cure, extra time, a diet, if he’s
found something – (but) he’s got a plan.”
Clarke’s wish came as a surprise to Andrea Dicks, who manages the
foundation’s wish-granting program and has grown accustomed to kids
asking for computers, or trips around the world, or the chance to meet
someone famous or be a model for a day.
“I couldn’t believe it when it came across my desk,” Dicks said.
“It’s not the wish you would typically think a 16-year-old girl would
wish for … Kelly is obviously just a very kind individual and she
wants to be able to help other individuals who have her condition as
well.”
As part of Thursday’s official visit to the Hospital for Sick
Children, Clarke presented Minassian with a check for over $1,500,
raised by her former classmates to help fund further research.
Clarke was diagnosed with Lafora disease in 2002, but only learned
about the illness from her parents 18 months later. She has had to
leave school and has lost contact with some of her friends, and
experiences twitches and memory lapses.
She says she will eventually end up in a wheelchair, suffer more
frequent seizures and need help with most of her daily activities. She
will not be able to have children and can’t be left home alone.
Minassian said he’s cheered by the fact Clarke is in “good shape right
now,” and noted that her anti-seizure medication has been effective at
holding off the seizures.
Eventually, however, those diagnosed with Lafora suffer more frequent
seizures, as well as dementia and visual hallucinations. Patients
usually die within 10 years of being diagnosed, Minassian said.
“That’s the way it is today,” he said. “There’s always tomorrow.”
Clarke said her meetings with Minassian, as well as others who are
working to find a cure for the disease, has helped to restore her
optimism.
“It makes you think you’re not the only one,” she said.
Clarke said she’s choosing to focus on her friends and boyfriend
Jamie, and plans to visit the CN Tower and Niagara Falls and get some
shopping in while she’s in Toronto.
“I don’t like to get upset about it because I’ve got lots of friends
and I’ve got a great boyfriend,” she said.
“I’ve got quite a lot of hope and I don’t like to give up yet, I try
not to. Otherwise, you’ve got nothing really, have you?”
© The Canadian Press, 2005