Two Weyburn families whose sons are afflicted with Duchenne's muscular dystrophy will be holding their second annual walk-run "Campaign to end Duchenne" in May.
The second annual walk-run will be held on Saturday, May 14, starting and finishing at Assiniboia Park Elementary School. Registration will start at 9 a.m. and the event starts off at 9:30 a.m.
The first-ever walk-run held last year raised a total of $19,500.
"We were surprised we raised that much. If we can reach that amount or higher, we'll be really happy," said Mandy Kerr.
She and husband Andrew have two young sons who both have been diagnosed with Duchenne's: Hayden, who is five, and Cameron, who is two years old. Their two nephews also have the degenerative disease, Noah and Carter Vandale, aged nine and five respectively, the sons of Daryl and Holly Vandale, also of Weyburn.
Duchenne's is a degenerative disease that results in muscle weakness, and gets worse as the victim gets older; also it generally only affects boys. Those affected are usually wheelchair-bound by the age of 12, and have a life expectancy in their 20s.
Of the four boys, it is most noticeable in Noah, who is on steroids to help restore some of his muscle strength; Hayden is also on steroids, said mom.
"He used to go up the stairs slowly and complained about the pain in his legs; now he doesn't complain at all, and he can go up the stairs quickly," said Mandy.
The condition was first found in Noah, and when Hayden didn't learn to walk until he was 26 months old, they knew something was wrong, but not what.
"Nobody picked up on it until we did blood checks and found his CK levels were high," said Mandy.
There is no known cure beyond the treatment with steroids, so for this reason, "research for us is very important." All of the proceeds of this event are going towards a charity, Jesse's Journey, dedicated to raising funds for Duchenne's research. The charity was begun by an Ontario father, John Davidson, when he first pushed his son across Ontario to raise money for research; later he walked across Canada to raise more money, and the charity continues today to raise funds for research.
For the fundraiser event, the option is available to participants as to which way they want to participate; they can walk the five-kilometre loop, or run the same route for either five or 10 km.
The route takes participants west from Assiniboia Park on Fifth Avenue to King Street and then down Saskatchewan Drive to the former location of the Souris Valley hospital, and then back again to the school.
Pledge forms are available from Sherilou's on the lower level of the Metro Centre downtown, or from the customer service desk at the Co-op Food Store, or by going on-line at http://endDuchenne.ca.
Organizers ask that registrations be in by Sunday, May 1, either by e-mailing to andrew@thekerrs.ca, or to the endDuchenne.ca website.
