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Lite up a Life for those living with ALS

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The ALS Society of Manitoba is running its annual Lite up a Life campaign this holiday season in support of those suffering from ALS.

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The ALS Society of Manitoba is running its annual Lite up a Life campaign this holiday season in support of those suffering from ALS. Photo Store

The ALS Society of Manitoba is hoping Manitobans will reach out and help ‘Lite up a Life’ this holiday season and so provide some hope to those suffering from ALS.

My husband recently lost a good friend to amyotrophic lateral sclerosis, or Lou Gehrig’s disease, as it is sometimes known.

Norm grew up in St. Eustache, Man., and he and my husband went to school together in Elie. Although Norm lived most of his life in St. Eustache, he moved with his wife and three children to Dryden, Ont., in 1998 to work.

Those who knew him said Norm was always a hard worker who treasured his family and his friends. He loved camping, hunting and simply being in the outdoors.

Diagnosed in late 2011, Norm rapidly went downhill. At the beginning he used a cane but soon he was in a wheelchair, unable to move either his arms or legs. He rode a scooter during the ALS walk through Assiniboine Park in 2012 but by the summer of 2013 he was unable to attend.

We visited him when he stayed briefly at the Brummitt-Feasby ALS House in St. James this past fall. By then it was extremely difficult for him to speak or eat or even hold his head upright.

The ALS House, says Leila Dance, a fundraising coordinator for the ALS Society, provides services, a place to stay, and support to people all over Manitoba, northwestern Ontario and southeastern Saskatchewan. Dance says that 3,000 Canadians currently live with ALS, 260 of them in Manitoba.

Norm passed away in October. He did not make it to his 60th birthday, which would have been this December. This will definitely be a tough Christmas for his family.

To raise money to help support services and programs at ALS House, the society is holding its official lighting ceremony at the Brummitt-Feasby House at 106 Kirby Dr. on Wednesday, Dec. 11.

The ceremony begins at 7 p.m. followed by "tours of the house, holiday music, coffee, hot chocolate and treats," Dance says.

People can offer hope and ‘Lite up a Life’ by donating money to light the bulbs on the Christmas tree at the ALS House from now until Jan. 31 by calling 204-831-1510 or emailing HOPE@alsmb.ca. Bulbs are three for $5, seven for $10, or you can light a whole tree —150 bulbs for $150.)

"Living with a life-limiting disease such as ALS means every moment matters," says ALS executive director Diana Rasmussen.

"It is important to raise funds to enhance a person’s ability to enjoy life even though they may not be able to walk, speak, eat orally, and may even have problems breathing."

For more information visit www.alsmb.ca

Cheryl Girard is a community correspondent for West Kildonan. You can contact her at girard.cheryl@gmail.com

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