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Drug trial gives hope to NV family
Boy is first Canadian to receive experimental treatment for rare disorder Benjamin Alldritt balldritt@nsnews.com
A North Vancouver boy’s battle with a rare degenerative disease took a turn for the better this August, when he was approved to take part in the trial of a promising new drug. He is the first Canadian to join the study.
Trey Purcell’s seven years of life have been a struggle with Hunter Syndrome. While he was still a baby, a series of seemingly unrelated medical conditions led to the heart-breaking diagnosis. “We were just devastated,” said Trey’s mother Deb Purcell. “I’ve never been hit that hard by anything in my life.” Those affected by the disease — 35 people in Canada — lack the enzymes to break down certain long-chain sugars. These sugars build up and damage many different tissues in the body and in most cases, including Trey’s, the brain. Untreated, Hunter Syndrome is fatal. In 2006, Trey started to receive IV Elaprase, which helps break the sugars down in the tissues of the body. The results, said Purcell, have been clear. “He’s growing when he wouldn’t otherwise be growing anymore,” she said. “Before he started treatment, his height was already starting to go down. He wasn’t shrinking, but in terms of his place on the growth charts. His facial features are softening. If you look at pictures of him before the treatments, his face was already starting to coarsen. “It’s helping his connective tissues and heart muscles. His organs have shrunk back to their normal size so his belly isn’t enlarged, and his range of motion is back within normal limits. He was having some trouble hanging on monkey bars and that sort of thing. It’s helping him live, basically.” On Aug. 19, after a battery of tests, including an IQ screen and a pressure See Patient page 11
Former North Van Mountie sues RCMP over pot raids
Jane Seyd jseyd@nsnews.com
A former North Vancouver Mountie is suing the government and the RCMP for raiding his home twice and seizing his medicinal marijuana supply. Carlos Cavaco and his common-law wife Marnie O’Neil filed the lawsuit against Health Canada, the Minister of Public Safety and the RCMP in B.C. Supreme Court Aug. 25. The couple, who both have licences to use and grow medical marijuana, are suing for damages for “assault, false imprisonment, invasion of privacy, intentional infliction of nervous shock and loss of reputations.” They said the two raids —one in December 2009 and another in July 2010 — have left them stressed, broke and suffering physical and emotional deterioration. As a result of the seizure, Cavaco — who suffers from multiple sclerosis — has had to take large quantities of morphine and has developed an addiction to that, See Marijuana page 4
NEWS photo Paul McGrath
TREY Purcell, 7, and his mother Deb will travel to North Carolina for ten days every month for the next six months to receive an experimental drug to treat his Hunter’s Syndrome.
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