Rob Darwin looking for community's help in financing MS treatment
A Duncan man with Multiple Sclerosis hopes the generosity shown by his community four years ago will be shown again as he seeks their financial help in funding a second operation for the same disease.
In September, 2010, locals financed Rob Darwin’s trip to India for “liberation,” therapy.
“You guys (the News Leader Pictorial) helped me tremendously. Everyone supported me. The community helped me raise $18,500 for the trip,” Darwin said.
In 2008 Italian researcher Paolo Zamboni suggested MS may be a vascular problem, known as Chronic Cerebro Spinal Venous Insufficiency, rather than what many have believed is a neurological, autoimmune disorder.
He hypothesized that a surgery, called liberation therapy, involving angioplasty, can leave those who have it symptom-free.
That was the case for Darwin, who said the 2010 surgery stopped the progression of the disease for two years.
“After the surgery, there was a 180-degree turnaround,” Darwin said. “Before, I had tremendous fatigue, I used to be exhausted at 11:30 a.m., after the surgery, it meant I could go all day.”
Other symptoms, beyond exhaustion and fatigue included what he called “brain fog” and heat intolerance.
“I can’t go outside for more than 10 minutes in 30-degree temperatures,” he said, which meant he spent a good deal of this beautiful summer inside.
During the past couple years, the symptoms have been creeping back; he says he’s now in the same shape that he was in before he went to India.
Adding to that, for the past eight months, he has experienced electric shocks up and down his arm which he thinks is nerve pain.
“I have hope that with this surgery, all my symptoms will subside,” the former custom door employee said.
With the recent birth of his second son Kieren, there’s one more reason to have the surgery.
“I can’t hold my son for very long before the fatigue sets in,” the 35-year-old said. “There’s so much I want to do with my four-and-a-half year old and six-week-old child. Being able to hold my young son for any length of time or to feed him would mean the world to me...”
Darwin is hoping to raise $12,000 between now and Nov. 25, the date that he’s tentatively scheduled for surgery at a facility called Synergy Health Concepts, in Newport Beach, California.
To date, he’s raised $3,000 from empties and bottles and his personal fundraising website. He also has a Facebook page, “the liberation group in support of Rob Darwin,” where he sells items that generous individuals have donated.
Liberation surgery, which many MS patients are strong advocates of is not currently funded by B.C.’s Ministry of Health.
“It’s still considered experimental, so it’s not covered by MSP,” the MOH’s Kristy Anderson said, adding that the safety and effectiveness of these experimental procedures for MS patients is unclear.
She said the Canadian Institutes of Health Research is now doing a clinical trial for CCSVI in persons with MS. Results will be available once the two-year clinical trial is complete in November 2014. Information about the clinical trial can be found on CIHR’s website.
Suzanne Jay, communications director with the MS Society of Canada, B.C. and Yukon division said the society’s position is that when it comes to medical treatment, decisions should be made with a health care provider. The society doesn’t give medical advice on treatments or surgery.
Having said that, in 2009, after Zamboni’s idea came forward, the society committed $2.4 million of it’s annual $9 to $10 million research budget to paying for research on CCSVI. To date, it has financed seven studies.
“Among the scientific community, the jury is still out,” Jay said, adding that not all of the studies have reported back in.
Darwin’s surgeon, who works out of Synergy Health Concepts in Newport Beach, told him that it’s encouraging that he got such good results with the last surgery; it bodes well for the one in November.
While he’s hopeful, Darwin’s going into the situation with his eyes wide open. He realizes MS is an individual disease. He says he knows of people who had the procedure who were symptom free for three years.
“Hope is really important, I truly believe in it,” he said.
You can help by participating in one of the following fundraisers:
• A garage sale and bottle drive will be held on Sept. 20 at Somenos Community Hall on Highway 18 from 9 a.m. to 3 p.m. Darwin is collecting salable items (no clothing or furniture please) as well as collecting bottles and cans until that date.
• If you have bottles or cans you’d like to donate, an account has been set up at Duncan’s bottle depot at 6476 Norcross Road.
• On Sept. 27, Nancy McNeil, of Forever Fit, will be hosting a fitness fundraiser at the Cowichan Sportsplex at 10 a.m. Donations will be gladly accepted.
• On Oct. 18, there will be a dinner/dance at the Duncan Community Lodge, at 2244 Moose Road. There will be a 50/50 draw, a silent auction and raffle tickets for sale.