BRIGHT smiling faces shine down from the pictures on the wall, a mom and dad surrounded by children of different ages.
It's clear that the big moments in everyone's lives are photographed and documented on this wall. The pictures each tell a slice of the story of children growing up together in West Vancouver. This is the Galvani family.
With three biological children, Fiona and her husband, Luigi Galvani, decided they would adopt more children and now have a total of 10 kids. Three of their adopted sons, who are biological brothers, have muscular dystrophy.
Muscular dystrophy is a degenerative neuromuscular disorder characterized by the progressive weakening of the muscles. The Galvani boys each have duchenne, one of the many forms of the genetic disorder.
"It is a disease where you start out being just like a little kid, then you have trouble walking, so it affects the large muscles first. And then it starts to affect the smaller muscles and then eventually affects the heart and the lungs. When those become more involved that's when you get the more significant health issues," said Fiona.
Luke, 19, and John, 17, don't let the fact they use electric wheelchairs slow them down. Both expertly navigate around the kitchen and out to the front lawn with ease, despite the fact they're maneuvering in 350-pound chairs. Luke is studying English at Simon Fraser University and is an advocate for muscular dystrophy and an avid fundraiser for Easter Seals. In June, he completed three B.C. Easter Seals 24 Hour Relays in three weeks under the moniker Easter Seals On Wheels.
Down the road he wants to go into journalism. "I need to be helping people, probably using journalism to advocate for people with disabilities," he said.
John is set to start Grade 12 at West Vancouver secondary and enjoys volunteering through his school's work experience program. He hopes to volunteer at the Vancouver Aquarium this year and would love to get to know the new African penguins there, he said.
Their little brother Vincent, 11, smiles and munches on his breakfast as he boasts about the closeness of his school - Gleneagles elementary. Fiona calls him their little miracle because, despite the odds, he's still able to walk and only uses his electric wheelchair to go long distances.
All three boys are part of the North Shore power soccer club, which is coached by their father. Last fall, Luke competed in Paris as a member of Canada's national power soccer team at the Fédération Internationale De Powerchair Football Association World Cup.
Luigi owns a construction company and Fiona works as a doula and both careers allow them the flexibility to always have an adult at home when the boys are there. Being home with her kids has allowed Fiona to instill in them the values of hard work and giving back to the community.
"For my husband and I, we just felt that regardless of what the long-term prognosis is, they have to get out and live their lives like they're going to live forever, just like everybody else does," Fiona said.
There's always been an expectation of all of their children to go to school, get good grades and study at the post-secondary level, said Fiona.
The message that Luke brings to his awareness campaigns is, "You can't have excuses, you need to live life regardless of your situation and make the most of it."
The whole Galvani family will be out at the Saturday, Sept. 8 Vancouver Walk for Muscular Dystrophy, held at Jericho Beach. The event is intended to raise awareness and money for Muscular Dystrophy Canada. Registration is at 10: 30 a.m., followed by the walk at 11 a.m. and there will be a oneor a five-kilometre route to choose from. The funds that are raised are used for advocacy, equipment, education, support and research.
For the Galvanis the support from Muscular Dystrophy Canada helps fill in gaps in provincial funding to buy equipment such as lifts for Luke and John.
Fiona adds, "The research that has been done over the last several years has really been amazing and they're getting to that point where we know a cure is going to come. When, we're not 100 per cent sure, but they're getting closer all the time."
Alyssa Goad, Muscular Dystrophy Canada manager of revenue development for B.C./Yukon, sees the Walk for Muscular Dystrophy as an easy way to support people with the disorder who live within their communities.
"Without our support those who are living with muscular dystrophy would have a really hard time with their day-to-day lives. It affects not only the individual but all of the family members that support them," said Goad.
A second Walk for Muscular Dystrophy is being held in Surrey at Bear Creek Park on Sept. 22.
For more information or to register for either the Jericho Beach or Surrey walks, visit www.muscle.ca.
