A brief upturn of the corners of his mouth marks the first hint of a smile on Kyle Seay's face. Then, his eyes sparkle and a full-fledged smile spreads across his face like a bright sunrise widening across a horizon.

"We're fortunate to have the best of a bad situation," said Brandie Seay, Kyle's mom.

Wide smiles are one of the few ways Kyle can communicate with his parents.

The 3-year-old Dubuque boy has a progressive and terminal neurological disorder called Canavan disease.

Apart from "hi," he's never spoken, and he has never walked or crawled.

"He has rolled over a couple times," said Steve Seay, Kyle's father.

There are only about 200 cases of Canavan disease in the U.S. and about 1,500 worldwide.

Canavan disease belongs to a group of conditions known as leukodystrophies, which result from defects in myelin -- the substance that protects nerves and allow messages to be sent to and from the brain.

"When we left the hospital (with the diagnosis), the doctor said, 'Do not go home and Google

benefit planned A breakfast benefit, silent auction and bake sale for Kyle Seay is scheduled to take place from 8 a.m. to 12:30 p.m. Sunday, Sept. 27, at the Oxus Grotto, 3011 Autumn Drive, Asbury, Iowa. The cost is $6 for adults and $3 for children 12 and younger. Proceeds will help the Seay family acquire a wheelchair-accessible van.

this,' and of course, we did," Brandie said.

After Kyle's birth, the Seays thought their infant son was "colicky."

"For the first five months, I held him," Brandie said. "For a while, he was sleeping two hours a day and when he wasn't sleeping, he was crying."

The Seays' only other child, 6-year-old son Justin, is normal, so they knew something was wrong with Kyle's infant development.

"At 5 months old, the fussiness went away, but he still wasn't making those (developmental) milestones," Brandie said.

Local physicians referred the Seays to Iowa City. It took a couple of weeks before tests helped produce the Canavan diagnosis.

"We had a lot of learning to do," Steve said.

The Seays learned that Canavan has no cure and no standard course of treatment.

Doctors treat symptoms of the disease, and the Seays use devices and equipment around their home -- such as the shell Kyle wears when he sits in his wheelchair -- to make his life more comfortable.

The hallmarks of the disease include potentially fatal seizures.

"They're not like regular seizures, like epileptic seizures," Brandie said. "He gets very stiff and the main issue is he stops breathing."

Life expectancy varies for children with Canavan disease. Most children do not live past age 10, but some live into their early teens.

"Some kids go downhill at different rates," Brandie said, "but because there is better treatment of the surrounding illnesses, life expectancy could continue to grow."

Pneumonia is one of the main causes of death for children with Canavan disease, and the Seays diligently watch Kyle for any signs of respiratory illness.

"In the winter, every two weeks we are at the doctor's office," Brandie said.

Kyle has discovered playing with finger paints -- he loves the texture --and he coos when Brandie tickles his side. His beaming smile grows and his eyes twinkle.

"We're lucky we have him," Brandie said.