EDMONTON- An Edmonton mother is sharing her struggle with Amyotrophic Lateral Sclerosis (ALS), just days ahead of the Edmonton Walk for ALS.
Susann Sakaguchi was diagnosed with ALS in October, after experiencing troubles with her hands over the summer.
“Last June I had problems with not having strength in my finger and my thumb,” Susann explained. “I couldn’t open or turn bottles, so I went to my doctor.”
After ruling out a few other diseases, Susann’s doctor diagnosed her with ALS.
“I really didn’t know what it was,” Susann said Wednesday afternoon, “so I didn’t know what to think.”
ALS, sometimes called Lou Gehrig’s disease, is a neurological disease that attacks the nerve cells responsible for controlling voluntary muscles. It progresses very quickly, paralyzing the body while the mind remains alert. Most patients die within two to five years of diagnosis and there is no cure.
“When I told my husband,” Susann said holding back tears, “He knew exactly what it was.”
“I was hopeless. I couldn’t think any good things,” Susann’s husband Hajime Sakaguchi said. “I just started crying and crying.”
Susann, a mother of two boys, has a passion for cooking. A former foods teacher, she used to spend all of her time in the kitchen.
“Whether it be at school or at home, I was cooking all the time, making everything from scratch,” she explained. “And now, I’m teaching my boys how to carry that on.”
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Susann’s journey has been tough on her entire family.
“It’s kind of scary for me,” said her nine-year-old son Kyo.
“You can’t really talk about it with your friends because they don’t really know what you’re talking about, because they don’t understand,” added his big brother Kai, 13.
“Just watching my kids’ faces. These kids may not have mom soon … It’s like living a nightmare,” said Hajime, who added that Susann never thinks of herself. “She’s always thinking about me. She always thinking about her kids.”
“She keeps hoping and smiling. She brings out the positive, which is great,” added close family friend, Karen Yue.
But while the past eight months have been life-changing for the family, they’ve never lost hope, and say they owe some of their optimism to the overwhelming amount of support they have behind them.
This Saturday, Karen, Hajime, his two boys and a group of their family and friends will join hundreds of others, as they walk for Susann in the 13th annual Edmonton Walk for ALS at Hawrelak Park.
Susann’s team has almost reached its goal of raising $10,000, which will go towards providing programs and services for people with ALS, and towards research.
“I just picked an arbitrary number of $10,000 to raise and I thought ‘oh, I don’t know if we can get there.’ But, we’re pretty close,” Susann explained, with hope; hope that one day, a cure for the deadly disease will be found.
“I know that is probably not going to be in my lifetime. But, of course, there’s the hope there.”
“People care about this and everyone is behind us. So, maybe something will come up, something will come up and we can laugh about it,” Hajime added.
In 2012, the Edmonton Walk for ALS raised $269,000. Organizers hope to raise $300,000 this weekend.
With files from Fletcher Kent, Global News.
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