Share this article

print logo

LIFE-ENHANCING GARB SUITS THE NEEDS OF LITTLE MISSY

FIVE-YEAR-OLD Melissa Senay lives in a world without sound or light, for she can neither see nor hear.

But she has feelings. When she is touched, she smiles; when she is hurt, she cries.

That she can smile and sometimes even laugh aloud is a tribute to an indomitable will -- a will that has beaten all of the medical odds.

Missy was born with spina bifida and hydrocephalus that twisted her body and enlarged her head. Doctors gave her a year to live, at most, but they were wrong.

She went to a special nursery school for two years, learned to talk and, with the help of a brace, could stand up. But for Missy, the lights went out and the music stopped shortly before Christmas 1988, when she was stricken with spinal meningitis.

It left her blind, deaf and unable to talk.

It made her a quadriplegic, no longer mobile, no longer able to hear her sister, Megan, calling her, no longer able to call out to her mother and father. No longer able to stand up with help.

Worst of all, it broke her hypothalamus -- the body's built-in thermostat that controls her temperature. At 3 years old, Missy had been dealt the queen of spades.

With body-temperature readings that could dip to 91 degrees and make her comatose -- or rise to 104 degrees or higher and make her convulsive -- Missy was sentenced to live out her life indoors.

For Missy, the sentence was harsh, according to her parents, Dave and Dee Senay. Until then, her simple pleasures had been few. They included a car ride, a summer vacation or a ride on the front-porch swing.

Without a working thermostat, Missy would spend most of her nights and days in a heated water bed in an over-heated house, or on a very warm day, daring to venture outdoors.

The quality of that life was unacceptable to the Senays and to Missy's therapist, Margaret Wolff. Together, they began the search for a medical miracle.

Form letters to a whole catalog of agencies involved in assisting the disabled were sent nationwide. The letter to the National Catholic Office for Persons with Disabilities was answered.

"Try NASA," it suggested.

The Senays did.

The National Aeronautics and Space Administration directed them to one of its suppliers, Life Support Systems, a company that had developed cooling suits for the nation's astronauts and was working on a heat-cool suit -- a hat and a vest that would control temperatures at both ends of the spectrum.

Some engineering refinements, such as making the seat with a light power source that would make it more mobile, are still being made. But the company's engineers have told Missy's parents that the problem is not insurmountable. It can be done.

There's a price. It may run as high as $5,000. And the Senays say that, if the expenditure will give Missy some freedom of movement for whatever time she has left, they are determined to try it.

With the help of friends, they will hold a fund-raiser July 14 at the Knights of Columbus Monsignor Nash Council, 261 S. Legion Drive. They also have opened a tax-deductible Missy Fund at the Marine Bank's Garden Village Office at 2345 Union Road, West Seneca.

Missy's search for a quality of life is inherited from her mother and father.

"We don't do very much," Mrs. Senay said, "but it's hard for us to accept the fact that we can't take our daughter to the park, the zoo or even to the mall. For Melissa, the alternative is to stay home and live in a water bed."

"I can't imagine our just not doing something," Missy's father said. "It hurts to beg . . . to go public, . . . but I'd do anything for her."

"We know she has feelings," her mother said. "When I comb her hair in the morning, she cries if I accidentally pull her hair. And when she's warm, she has a beautiful little smile.

"When she first gets up in the mornings and she's warm, she looks up. I realize she can't see, but we always say, 'Missy is talking to the angels.'

"It's hard to believe that she once went to school, learned to talk and how to count to 10. We'd like to think that, if she gets this suit to control her temperature that she could someday get on the bus again and go back to school.

"We know she'll never get better," her mother added. "We know that she won't be able to stand up or talk again. All of that has been taken away from her forever, but there are still some things we can do for her to make her life easier. And we are going to do that. . . ."

Missy never again will hear the song of a bird or see a flower in bloom. But to the Senays, she is a "special child," nonetheless, and her special harvest in life will be in reaping love in abundance.

There are no comments - be the first to comment