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| Rachel and Louise Dean | | | |
Dominik Kurek, OAKVILLE BEAVER STAFF
May 13, 2010 - 2:19 PM
Nikki Wesley / Oakville...
On a roll to cure...
This weekend Oakville and area residents have a chance to walk, run or roll to help fight a disorder that causes many people to not be able to walk themselves.
The first ever Walk for Muscular Dystrophy (MD) in Halton is taking place at Coronation Park Sunday, May 16. Oakville is joining a list of events across Canada that raised $870,000 for Muscular Dystrophy Canada last year.
Two of the expected 100 people at the inaugural event are a pair of Oakville sisters, Rachel and Louise Dean, who have the disorder themselves.
“It’s a really good cause and it will raise money to hopefully find a cure and raise awareness,” 18-year-old Rachel said of the event.
“And it will be fun,” added little sister Louise, who is turning nine on the weekend of the walk.
MD is the name for a group of genetic muscle disorders that are characterized by progressive weakness and wasting of the voluntary muscles that control body movement. It can affect anyone at any age. It is mainly an inherited disease and it can lead to a shortened life expectancy. There is no known cure.
Rachel and Louise will be joined at Coronation Park by their middle sister Erin, who was skipped by the disorder, along with their parents, family and friends. Rachel, who has been in a wheelchair for some years, will roll at the event while Louise will walk with some assistance.
The two sisters have a form of Limb-girdle MD, which affects the hip and shoulder muscles most severely — otherwise known as the limb girdle muscles.
“Limp-girdle doesn’t affect life expectancy, it doesn’t affect intellect,” said the girls’ mother Julie Dean.
“The type they have isn’t the worst muscular dystrophy.”
Rachel was diagnosed with the disorder when she was about nine-years-old, around the time Louise was born.
“I was not doing well in gym class, I had to hold myself up going up the stairs in school,” she said.
“We just thought she was non-athletic, maybe a little clumsy, but not a disease like this,” Julie added.
The family saw doctors but none were able to find a reason for Rachel’s weakness.
However, the girls’ uncle, who was a pediatric neurosurgeon at the Hospital for Sick Children, diagnosed her with the disorder.
Tests were then done on the other two girls and came back positive for Louise as well.
MD is hereditary, though no one on their mom’s side and their dad’s side (Robert) had it themselves. It was brought on by dormant genes in both mom and dad.
Rachel is now in a wheelchair and can pick up only small, light objects.
“Louise will probably be in a wheel chair in a few years,” Julie said. “Louise is only eight and it’s clearly evident she has it.”
The youngster is full of energy, but her mother said she has some trouble with walking and falls down frequently.
The family home has an elevator so that the children can move around the two floors and basement of the house. There is also a wheel-in shower, raised toilets and a lift to get into the swimming pool. The lift was paid for by the Sunshine Foundation.
Despite the disadvantages, ask both girls and they will tell you they are just like anyone else their ages. They both have a lot of friends at school.
Rachel no longer plays sports, but she plays jazz piano, does pottery and painting and will be going to Carlton University in Ottawa in September for pre-law. Also, this summer she is going gliding in Toronto.
Louise enjoys playing baseball herself.
“I can play anything except for hockey and skating,” she said. Like her older sister, she, too, plays the piano and does pottery.
This year’s walk will have a 1-km or 5-km route. Pizza, refreshments and snacks will be donated by local businesses and will be provided. Anyone who participates will also be entered into a raffle for prizes that include a round of golf for two, restaurant vouchers, a children's basket, a movie package and others.
Registration begins at 10 a.m. and the walk starts at 11 p.m. People can register and make pledges at www.muscle.ca/walk.
