Life and Death: Mother Copes With Disclosing her Illness

After Lou Gehrig's disease diagnosis, one mother struggles to tell her children.

ByABC News
September 17, 2007, 6:08 PM

Sept. 18, 2007 — -- A mom. A dad. Two boys. And one girl. A picture-perfect Midwestern family vacations in Europe. They eat strange food in England, take typical tourist pictures at Stonehenge and climb the Eiffel Tower.

To a bystander, the Chamernik family might look like characters in the average home movie except, perhaps, for the stark fact about the mother.

Her name is Aimee Chamernik. She's 38 years old. And she's dying.

She is dying and she is not fighting that fact. "I'm gonna beat this thing," she says. It's not her goal to impress by saying this. For her, it's something else. It's about her kids and showing them something in the time she has left.

She's attempting to show them how to live -- in a hurry -- before she dies. And so they go on vacations, they do homework together and they bake cookies.

Click here to see some of Aimee Chamernik's responses to your questions and comments.

Chamernik's disease, amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, makes her progressively weaker. "Nightline" taped interviews with Chamernik's family over several months, beginning early last spring.

Just as Aimee's death approaches gradually, so has her gentle approach to telling her children the truth. At first, she just couldn't.

"You know, Emily at the time would run up and hug me so tight and say, 'Oh Mommy, I just love you soooo much,'" Chamernik says, recalling her daughter's affection. Emily, now 7, was just 4 years old at the time of her mom's diagnosis. "And I would think, No, don't love me that much, because if you love me that much it's gonna really, really hurt when I'm gone. And I'd rather start severing that connection now."

Chamernik and her husband, Jim, had been married for 12 years, settling in north of Chicago and having kids when the disease set in ever so subtly, first going after the muscles that controlled her speech.

"I would be reading out loud to Nicholas, who was 5 at the time," she recalls, "and he would correct my pronunciation because I would have some odd slurring or difficulty enunciating the words."

In time, the disease found her legs and later began spreading to her hips and her arms. All these muscles will cease to work eventually, until one day it will be her chest muscles and then her breathing will stop. On average, it takes three to five years. Aimee is just starting year four.