Life and Death: Mother Copes With Disclosing her Illness

"Emily kept saying, 'When are we going to have tacos again? I really like tacos.' One day … she hops in the van, all excited as usual, and I turned and said, 'Well, somebody I love very very much has said they would like to have tacos.' She's like, 'That's me, that's me!' And in that moment, she has a huge grin, and she's bouncing up and down.

"I realized that, you know, this is life. Life is making tacos. Life is getting that reaction from her and getting that smile."

"They're good tacos too," her husband Jim chimes in.

From that point, according to Aimee, she was alive again to her family and to a new role she decided to pursue: campaigner for more research money to find a cure or treatment for ALS.

She decided to make herself a symbol for the cause.

"There isn't a large window of opportunity for most patients to be able to make a difference in the world," she says. "We feel like since I'm fortunate and have a fairly slow progression that we need to take what time we have and use it, spending as much time making as many good memories as possible and spending as much energy as we can spare on making a difference in this fight."

'Ask About Aimee'

Chamernik's children are a part of 'Ask About Aimee' , a group she started to raise awareness about ALS. And so it is clear that the kids know their mother is in trouble.

Nicholas -- the oldest -- truly understands how much trouble. Jim and Aimee actually met with a social worker to help them figure out how to tell the children.

"And Nick came home from school, he and I were talking about -- he was asking if I would ever have to use a wheelchair. That was the jumping off point for discussing everything about ALS."

She told her son how she would have to use a walker and how, eventually, all of her muscles would stop working.

"He got choked up at a few points, but he is very much into wanting to figure out a solution."

Emily knows some, but not yet as much as Nicholas.

"Emily was much more emotion-oriented. She wanted to talk about heaven; she wanted to talk about how she was going to talk to me if I was in heaven. Maybe God can make a phone so I can call you in heaven when I need to talk to you."

Not Taking it Sitting Down

Recently, traveled to Washington, D.C., with a group of activists lobbying Congress for more research money for ALS. At this point, she needed the wheelchair, with her husband Jim pushing.

But when a member of Congress approached to shake hands, stood to do so.

"For as long as I possibly can, yeah, I think that's important."

For more information about ALS, visit the following Web sites:

Les Turner ALS Foundation

International Alliance of ALS/MND Associations on the Internet

A Ride for Three Reason

Ask About Aimee

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