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  Tough mom beating odds against ALS
Posted November 8, 2002 in PALS Profiles

Kathie Hormby is a living miracle, battling and surviving Lou Gehrig's disease the past 14 years. ALS victims are only supposed to have a life span of two to five years.

The baby son she held in her lap and wept over - because she believed she would not see him grow up - is now a high school freshman at Hume-Fogg Magnet High School.

Miracles still can come at a high cost.

Hormby, 53, is now living at home in Nashville. That's because the family ran through the lifetime dollar limit for her private insurance in a nursing facility that housed her. She had lived there the past six years. Her husband, David, had to quit his job in September to care for her at home full time.

Both can lose a lot of sleep, not a good thing when it comes to husbands and wives getting along. On a bad night, Kathie will alert David with an alarm every hour. Her lungs need to be suctioned of fluid. That requires David to insert a suction tube through her trachea opening.

Tubes are a part of her life, for feeding and functions of the body. ALS, or amyotrophic lateral sclerosis, slowly paralyzes victims and destroys the ability to speak and to breathe. But they can think clearly.

Hormby lost the ability to talk in 1996. She still moves her fingers and her head from side to side. She activates an alarm by moving a knee.

Her keen mind has allowed her to raise her son and communicate with the outside world. Morse code allows her to talk to her husband and son. She first learned it as a Navy spy. She has a device keyed to the twitching of her fingers. It also allows her to use e-mail. Technology has been a godsend.

As this nation gets older, couples of whom one spouse is the full-time caregiver will become more common. We can only pray that more of us will be able to follow the example and attitude of the Hormbys.

Remember them when you think you have it too tough, or your marriage is not so easy as you'd like.

''I am more madly in love with her, being home for a month, than I have been in decades,'' her husband said. The Hormbys have been married for 27 years.

''Being around her, the old feelings have been rekindled. It's her dedication to the child she is raising, relentlessly. She always asks, 'Do you have your homework done? Have you done your work for the Scout merit badge?'

''She does the hard work. She is the nagging parent.''

Tom has been very helpful in the care of his mother.

''If I have to run up to the supermarket, he will watch his mom and even suction her lungs when it is needed,'' David Hormby said. ''He went to classes to learn.''

The Hormbys could be all caught up in worries about finances. But it's so apparent in Kathie's survival that they have been focused on living every day to the fullest and on the value of the presence of both parents raising their son.

Finances are tight. Kathie and her son receive Social Security benefits. But TennCare changes have removed the hope of home health-care staffing. The only way they can receive it is if they spend themselves into destitution, David Hormby said.

But this is a family that has learned to persevere and take joy in living, even if it is another day of the battle against ALS.

The miracle of Kathie Hormby's continuing life is not the result of new drugs or a new regimen of therapy. Credit belongs to the old medicine called love and the most rewarding of human exercises known as loving - most potent in a mother determined to defy the tears of 14 years ago and see her child grow up.

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