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ALS ICE BUCKET CHALLENGE: Westside Media Group brings you the story
Family affected by ALS supports viral fundraiser
September 15, 2014
For junior Sabrina Severin and freshman Samantha Severin, their 2012 Thanksgiving dinner consisted of watching their grandmother confined to a wheelchair, unable to taste the fresh turkey at the center of the table.
Unable to carry a conversation with her family.
Unable to laugh at their antics.
Unable to utter words of affection and admiration to her family ever again.
That year was their grandmother, Helen Severin’s, last Thanksgiving. She passed away two years ago from Amyotrophic lateral sclerosis (ALS), an incurable disease which degenerates muscles and paralyzes victims.
Over the course of one year their grandmother lost the ability to speak. She could no longer chew and swallow and was forced to get a feeding tube.
“[The disease] started paralyzing her body and she couldn’t move [anymore], then it just took over,” Sabrina said.
ALS takes away the victim’s voluntary muscle movements. The Severin sisters noticed the disease taking its toll on their grandmother during family holidays, making simple activities a challenge.
“Thanksgiving is where you eat a ton, and she just couldn’t eat,” Sabrina said. “It was really difficult to watch her struggle.”
Sabrina and Samantha were told their grandmother had one year to live. They tried to make the best of it by spending as much time with their grandmother as possible and appreciating her while she was alive.
The sisters have adopted the same positive outlook when it comes to the attempt to find a cure. They both participated in the ALS Ice Bucket Challenge, founded by former Boston College baseball player Pete Frates, who had to retire at age 27 due to the disease.
“If my nana were still here, she would really like [the ALS ice bucket challenge],” Samantha said. “I think she would be glad someone started this and that people are trying to figure out something to help people and inform them about the disease.”
To complete the ice bucket challenge the participant must first record a video of ice water being dumped onto them. Afterward, they nominate or tag others to partake in the challenge.
Once the ice bucket challenge is completed, many people donate money to the ALS Association website. This year alone, $94.33 million has been raised, according to BBC News. Sabrina and Samantha both agree that whether money is donated or not, it’s acceptable because curiosity is sparked and awareness is still being spread about the disease.
An abundance of people have taken part in this challenge, including famous athletes, celebrities and well-known politicians. The walls of Westside High School are no exception. Students and staff members alike have also participated in the ice bucket challenge.
When surveyed, 75% of Westside students who participated in the ALS ice bucket challenge said they were not aware of what the disease is. The survey was out of a pool of 87 random students from various grades.
The same disease that students don’t know about took the Severins’ grandmother’s life. We can’t bring back those lost from ALS, but we can try to prevent numerous deaths in the future.
The Severin sisters hope to help educate the staff and student body about ALS. They also hope that, through fundraising, scientists may be able to find the source of the disease, a way to slow it down or a cure.
Sabrina and Samantha never got to hear their grandmother’s voice on the last Christmas they spent together. Emotions ran high that day, and Sabrina recalls it being hard to give even a simple thank you after receiving a present from her.
The Severin sisters know firsthand the effects of ALS because they had to watch their grandmother slowly suffer through them. Yet somehow their final words about the topic are not ones of negativity, but ones of hope and optimism.
“Cherish the time that you have with [loved ones],” Sabrina said. “They go slow, and it’s hard, but they’re still there.”
This story and the infographics throughout are from Issue One of the Lance. The video is brought to you by WTV. This is part of the Westside Media Group’s multimedia coverage packages. Look for more stories like this throughout the year!