MOTHER OF DISABLED SON HOPES FOR HELP

JACKSON -- The Lewis household was a peaceful one on Wednesday.

Candles were lit all over the room. A refreshing breeze blew through an open window. Julie Andrews crooned in the background, singing a song from "The Sound of Music."

And in a corner sat 5-year-old Taylor Lewis, the reason for it all.

He loves the relaxed atmosphere. "The Sound of Music" soundtrack makes him smile. He needs the room a bit cooler than most people to be happy.

And he suffers from an incredibly long list of ailments, the names of which most people couldn't pronounce.

His mother knew something was wrong even before Taylor was born. Her first child, Sarah, kicked and moved during the pregnancy. Taylor was exceptionally still. Doctors assured her everything was fine.

It wasn't. Taylor was born without chambers and valves in his heart and was destined to have surgery after surgery to deal with his disorders. He had his first open-heart surgery at three months -- two others followed.

Taylor also had four brain surgeries. Even today, a shunt carries excess spinal fluid from his brain to his abdominal cavity.

Because of two strokes, Taylor is brain damaged. He can't sit up, crawl or feed himself. His vocabulary is limited to the words "mama," "coca," "go" and a few others.

But that communication problem doesn't keep his mother from understanding him.

"I know Taylor inside and out," his mother said. "I know his cries, his sounds, when he is upset, when he is happy."

He definitely seemed happy Wednesday afternoon, banging on an electric piano and playing with some balloons from a bus driver for Parkview State School -- a Cape Girardeau school for the developmentally disabled. Taylor goes there every day he is able for therapy and learning.

Life has been difficult for the family since Taylor's birth. Even with her 10-year-old daughter's help, Jill said she sometimes feels overwhelmed by all the work Taylor requires. To go anywhere, she has to pick up her son and load him into the car.

Jill is just over 5 feet tall, and carrying a 37-pound weight isn't easy for her. Soon, Taylor will weigh even more. In March, another back surgery will force him into a reclined position for a year, meaning he won't be able to sit up in a car seat.

That is why the family is asking help from the community. Jill may need up to $40,000 to purchase a minivan and make it wheelchair accessible. If she can at least buy the van, a charitable organization may be willing to pay for the customizing.

A fund -- called the Taylor Weston Lewis Benefit Account -- has been set up for the family at South East Missouri Bank, 111 S. Broadview in Cape Girardeau.

"I don't want my son institutionalized just because I can't carry him," Jill said. "I'm asking for help from the bottom of my heart."