School is a place many students dread, but for James Simpson, it's where he finds a sense of normalcy.

Though he graduated on time and got a special education diploma in 2006, he continues to catch the bus each morning and attends Greenbrier High School a couple of hours a day.

"He has always loved school," said his mother, Laura Stroud, and he continues to love school.

Though daily attendance for the 20-year-old is uncommon, his medical condition is more so.

Mr. Simpson is one of the few people in the world suffering from Niemann-Pick Disease, a rare, fatal neurological condition. There are only 500 known cases, and he has Type C, the rarest form.

It has left him with constant pneumonia, unable to walk, talk or eat.

Still, he loves to go to school, an opportunity allowed by federal law.

At Greenbrier, he learns social, dressing, eating and work skills in what is called a "moderate intellectually disabled" classroom, his teacher Betsy Barrs said. The focus is on adaptive skills, rather than academic skills.

"I know it doesn't sound like education or whatever, but we meet his needs," she said. "I think whatever he has in there we bring it out when he comes here."

Schools have become adept at working with students with special needs, said Karen Carter, the development pediatrician at Medical College of Georgia Children's Medical Center who is caring for Mr. Simpson.

"That social interaction is very beneficial," Dr. Carter said. "Physically, they are stronger. Mentally, they are stronger."

School gives the sick student a sense of purpose, a reason to get up and get going, she said. It also gives the caretaker a break.

The law allows students such as Mr. Simpson to remain in special education classes until age 21.

"This gives him the opportunity to keep going," Mrs. Barrs said. "I know when he gets to the point that he doesn't want to come to school, it won't be long."

First diagnosed when he was 21/2, Mr. Simpson had his disease controlled by medication and his life was somewhat normal.

Peddling his bike around the streets of his Columbia County neighborhood, he was known as "The Mayor." Police officers would often drive by to check in and ask him what was happening, his mother recalled.

"He would do everything every other child would do," Ms. Stroud said.

He loved to swim, socialize and sing karaoke, not to mention act the class clown. He also competed in Special Olympics events.

"He was actually a normal child up to the age of 14," his mother said.

Then came the seizure.

When he was 14, his doctor gave him two years to live, Ms. Stroud said.

"Every time we see her, she says, 'It's not long. It's not long,' " she said.

Now Mr. Simpson's bed is within arm's reach of his parents' bed. Watching and caring for him has become a round-the-clock responsibility.

"That's my biggest fear is waking and finding him (no longer breathing)," Ms. Stroud said.

On several occasions, she has found him blue, unable to catch his breath. She strikes him in the middle of his back and he begins breathing again.

Twice a day, Mr. Simpson must wear a special vest attached to a machine that shakes his body, loosening up the mucus collecting inside him.

Some mornings, he suffers what are called "grand mal" seizures.

"That scares me more than anything," his mother said. "The noise alone just goes right through your body."

It was a difficult decision, but the family has signed the paperwork that prevents him from being resuscitated.

"I just feel that he's suffering at this time," she said. "He's just tired."

Doctors had warned her that her son's life would be difficult, but she said she is thankful for the 14 years he had before the disease took over.

While she talks, her son sits nearby.

He watches television, reacting when his mother says something that sparks a memory.

He smiles when his sister, Amanda Poole, recalls the jokes he would tell, and he begins to cry when she talks about friends he no longer sees.

"It's sad because he wants to get up and play, but he can't," Ms. Stroud said.

Reach Greg Gelpi at (706) 828-3851 or greg.gelpi@augustachronicle.com.