White Rock’s Dawn O’Kane had a big year in 2003: she won her fourth Canadian dance championship, got engaged – and married – and appeared in the Richard Gere movie, Shall We Dance.
It’s also the year the Arthur Murray co-owner and dance instructor learned the likely root of regular numbness she’d had over the years in her lower back after dancing.
She was diagnosed with multiple sclerosis.
Most often diagnosed in young adults, MS is a disease of the central nervous system that attacks the myelin that protects the nerves, causing symptoms ranging from loss of balance and impaired speech to paralysis.
Sent for multiple tests after developing an excruciating migraine – traced to optic neuritis, an inflammation of the nerve that connects the eye to the brain – O’Kane got confirmation of the disease in June of 2003.
Nine years later, the disease has progressed to the point the 38-year-old can’t even consider dancing on the national stage again. She relies on a walker to get around and has a persistent tremor in her right arm that prevents her from managing even the most basic of activities on her own.
“I can’t cut my own food,” O’Kane said.
As discouraging as the symptoms of her MS are, O’Kane is determined to dance again – with her husband, with their daughter and in teaching. And there’s an effort afoot amongst those who know her to help make it happen.
Two fundraising events are to take place this month, with proceeds to benefit the cost of a treatment O’Kane plans to receive at a clinic in California. Developed by Italian physician Dr. Paolo Zamboni, the “liberation therapy” targets narrowed veins in the neck; a condition Zamboni believes is linked to MS.
As the treatment is not currently available in Canada, many Canadians – including at least one other Semiahmoo Peninsula resident – have travelled south of the border or overseas to receive it.
And while the federal government announced late last month that it will begin to fund clinical trials, O’Kane said it could be years before the treatment is readily available here, and she can’t afford to wait.
“They’re starting with a really small, monitored group and who knows how long it’s going to take them to get the research to prove… it’s helping people,” she said.
“I don’t need to wait for five years before I get my life back.”
Suzanne Jay, communications director with the B.C. & Yukon Division of the MS Society, confirmed funding for Phase 1 and 2 trials has been approved, and that it means a “select group” of people – 20 to 30 – will receive the procedure as a result.
Jay hesitated to speculate whether the trials would prove the treatment effective, or how long it might be before sufferers see it offered in Canada. But she described the pace of the process to date, and the steps taken by the MS Society to facilitate it, as “unprecedented.”
The society’s extraordinary call for research proposals, the fact they specified the research topic and a partnership with their U.S. counterpart to support seven research studies were all firsts, Jay said.
Jay described the treatment as “definitely worth investigating,” given the number of people who are travelling outside of the country at great expense to receive it. People look to the society for credible information that will help them make decisions regarding their health, and it is one area where officials simply don’t have the scientific data to meet that need, she said.
If determined effective, the society will be able to advocate for the treatment to be covered by Canada’s medical plans, she said.
O’Kane has already learned through her own research that, like the disease, the treatment impacts each patient differently. Some have reported significant improvements, others none at all. Testimonials such as one she heard firsthand from a Fraser Valley woman who received the treatment in Mexico, help O’Kane remain optimistic.
“She was the 13th patient that had it done in Cabo San Lucas three years ago. She said it completely changed her life.
“I’m very hopeful.”
The fundraisers for O’Kane are set for July 22 and 24. The first, to be held on O’Kane’s birthday, is a 7 p.m. piano concert at White Rock Community Church (15280 Pacific Ave.). Featuring local concert pianist, Angela Zielke-Vaughn, the evening is to also include a silent auction.
On the Sunday, a garage sale is to take place from 9 a.m. to 4 p.m. at the Arthur Murray studio, 15151 Russell Ave.
Organized by friends Heather Briese and Connie Ogilvie, the event, dubbed Support Dawn Dancing Again, is to also include a barbecue and craft table. O’Kane’s daughter, Isabelle, will run a lemonade stand.
Proceeds from both events are hoped to bring O’Kane closer to the $15,000 she needs to afford the treatment and expenses associated with receiving it. Since May, she has amassed more than $5,000 towards the goal.
Items are still being sought for the garage sale. Anyone with good-quality used goods to donate may drop them off at the dance studio during business hours July 22 and 23, or before 7 a.m. on the 24th.
For more information on the piano concert, call 604-816-5780.