Amanda Song and her family have been on a rollercoaster ride for eight years, and they’d like to get off.
That’s how Song’s husband, Jerome Yee, describes their lives since her diagnosis with ALS, or Lou Gehrig’s disease. Song has lived with the neurodegenerative disease for eight years – longer than the typical two to five years given to those diagnosed with ALS. She is now paralyzed and relies on a feeding tube for nourishment. Unable to speak, Song uses a computer to communicate.
Song’s diagnosis had devastating effects on the emotional well-being of the whole family. Her two teenaged sons had a difficult time adjusting to and understanding the challenges of having a parent with ALS. The youngest left home in 2005 and hasn’t contacted the family since.
“No one knew how to handle this type of situation: when to push, when to hold back, how much space to give,” says Yee.
The Song-Yee family is one of more than 1,000 Ontario families living with ALS and coping with the physical and emotional challenges it creates. On June 13, the ALS Society of Ontario encourages Mississauga residents to help families like the Song-Yees by supporting the Mississauga WALK for ALS at J.C. Saddington Park. Registration begins at 9 a.m. and the 5 km walk at 10 a.m.
“We participate in the WALK for ALS every year because it brings friends and families together for a day of fun and support,” says Jerome. “There’
Now in its ninth year, the WALK for ALS is the ALS Society of Ontario’s signature event and largest annual fundraiser. In 2008, more than 5,000 participants raised $1.15 million. Seventy per cent of the proceeds fund the province’s equipment and support services programs, while the remaining 30 per cent funds research towards a cure. Mississauga is one of 28 communities across Ontario holding walks this year.
“The ALS Society of Ontario’s goal is to help ease the physical, emotional and financial burdens ALS creates,” says Maureen Sheahan, President & CEO, ALS Society of Ontario. “With the help of volunteers and supporters across the province, we’ve grown the WALK for ALS into our most successful and anticipated event. We ask the public to help us continue this success story in 2009.”
For more information, or to support the walk, visit www.walkforals.ca.
ALS, amyotrophic lateral sclerosis or Lou Gehrig’s disease, is a fatal and rapidly progressive neuromuscular disease affecting more than 1,000 Ontarians and their families. There is no cure or effective treatment. Eighty per cent of those affected die within two to five years of diagnosis. The ALS Society of Ontario is a non-profit organization committed to providing equipment and support services to increase quality of life and provide independence, dignity, hope and choice to people with ALS.
