Website offers support to children of ALS patients
News
Nov 28, 2008


Guilt, abandonment and isolation are just some of the feelings a child whose parent has Amyotrophic Lateral Sclerosis (ALS) may experience. But there is hope.
Jane McCarthy, director of services and education at the ALS Society of Canada, has developed a websitebased information and support program — www.als411.ca — specifically for young children and teens to better understand the fatal neuromuscular disease.

“Children living with a parent who has ALS often feel they don’t have many people with whom they can discuss their feelings about the disease,” explained McCarthy in a news release. “The other adult or parent in the home is busy care giving and maintaining a household, while school-aged friends are perceived to be unable to relate to what his or her friend is going through. This often leaves the child alone to deal with his or her emotions.”

The children’s site has audio, which is helpful to children who have not yet mastered reading skills. It also includes interactive games like crosswords, jigsaw puzzles and matching tiles. Links to other resources and websites are also featured on both the children and teen sites.

ALS, more commonly known as Lou Gehrig’s disease, attacks and paralyzes the muscles, ultimately resulting in death. Approximately 2,500-3,000 Canadians are living with the disease and 80 per cent of those affected will die within 2-5 years of diagnosis, according the ALS society.



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