Woman Coping with ALS, Makes Most of Life

Updated: Jan 16, 2008 10:08 AM EST

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January 16, 2008--Trying to help children understand death is a tough task for parents. For one Urbandale woman, the job is even harder because it's personal. Stacie Rhea is only 38. She was diagnosed with ALS, Lou Gehrig's Disease, two years ago. It's a disabling disease, with no cure, leaving Rhea trying to make the most of her time with her three young children. As Channel 13's Mark Tauscheck reports, Rhea is more concerned with her family's well-being, than her own.

Just like every day, Stacie Rhea plays with her two youngest children, Casey and Ellie, as if nothing is wrong. That's just what Stacie wants them to think. Stacie completely understands what ALS will do to her body, she watched her mother die from the same disease. In fact, Stacie vividly remembers her mother admitting she had thoughts of suicide when her body started failing. "I totally understand that thought, and this will alarm some people, but I've had those same thoughts, I've told my husband before, you know what I just about took every pill in the house and said I'm done...I'm not going to go through it...and you know what stopped me? I walked into kids' room, and I said I can't do that to them," says Stacie.

Stacie and her husband plan to record video of her telling stories about her children, that they can watch after she's gone, and she has a lot of shopping to do. "I'm going to buy presents my hubby can give them every year 'til their 18th birthdays," says Stacie. In preparation for the inevitable paralysis that will leave her immobile, a new addition is being built on the back of the house that will allow the entire family to sleep on the main floor, so Stacie can watch her children play.

"They're gonna have to go through this with me, and understand...use communication devices and I'm just going to have to get communication devices and read to them if it's a computer voice over or not I still have to be a big part of their lives as I can, can't be all about caring for me," says Stacie. She and her husband also have a 12-year-old, Kyler, a quadriplegic with cerebral disgenesis who lives at a facility where he receives 24-hour care. For ten years, Stacie took care of him at home until he got too big. She never could have guessed, she will eventually require around the clock care herself.

Eventually, she'll have to tell them. "I look at them in bed at night and think, I can't ruin your world like that, I can't you're too innocent and it's just not time."


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