Canstar Community News - ONLINE EDITION
Event to raise funds, increase awareness
It’s called the drunk disease. But two sisters are working to remove that stigma and raise awareness about the rare disease. Brittany, 18, and Chelsey, 21, Sommerfield are living with Friedreich’s Ataxia.
Friedreich’s Ataxia or FA is a rare genetic disease that affects about one in 50,000 people. The sisters have only met one other person in Manitoba with the rare genetic condition. They were diagnosed five years ago when Brittany was 13 and Chelsey was 16.
"Basically they call it the drunk disease because people think we’re drunk, our speech slurs and we’re kind of like wobbly. Sometimes we walk just grabbing someone’s arm and it just looks like someone is helping some drunk girl," Chelsey said.
The disease affects the nervous system. It makes everything difficult for the young women. It takes longer to walk up stairs or even make a cup of coffee because the disease affects co-ordination. There is currently no cure for the disease and over time it slowly impairs movement, co-ordination, vision, and causes heart problems.
Landon Butterworth, who was born and raised in St. Vital, is hoping to help the Sommerfield sisters. He is planning a social to raise awareness about the disease and to help the Sommerfield family with the costs associated with Friedreich’s Ataxia.
It is an expensive disease. The Sommerfields still need to modify their home so Brittany and Chelsey can get around easily, travel to the United States for medical testing, and buy new walkers.
The social will be held Fri., July 20 at Glenlee-Norberry Community Centre located at 26 Molgat Ave. Tickets are $10. To purchase tickets search "Social in Support of FA — Beard Bonanza" on Facebook.
Butterworth will shave his hair and beard at the social. He’s been growing them for a year to raise awareness.
"People started offering me money to either grow my beard out or shave it, so I saw a way to raise money and a need to help out the family," he said.
Butterworth said hearing the sisters’ story makes him grateful for what he has.
"Every day is a struggle for them, from pouring a glass of water to brushing their teeth, even reading because the disease affects rapid eye movement," he said.
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You can help people affected by cystic fibrosis by watching people play floor hockey.
On July 14 there will be a Shinerama floor hockey tournament at Glenwood Community Centre from 12 noon to 4 p.m. It is a four-on-four tournament with goalies.
Snacks and refreshments will be sold throughout the day. All proceeds from the tournament and food sales will go to Cystic Fibrosis Canada.
Krystalle Ramlahkhan is a community correspondent for St. Vital. She can be reached at firstname.lastname@example.org.
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(1 of 10 articles for this month)11/25/2014 5:36 PM 0