Child With Rare Illness Faces Surgery

Family members and teachers tried everything to understand why young Alycia Jones never seemed to be able to comprehend the simplest schoolwork. No matter how much time educators and others spent with Alycia, 10, she never appeared to catch on.

It turns out it was something neither her mother, Mikie Jones, nor any educator could control.

Doctors last year diagnosed Aly with Rasmussen’s encephalitis, an extremely rare, progressive, central nervous system disorder characterized by seizures, paralysis on one side of the body, inflammation of the brain and mental deterioration.

“It was both a pain and a relief,” Mikie Jones said. “The severity of her condition can kill her, but the relief was knowing what is wrong.”

In hopes of saving Aly’s life, doctors are preparing to perform radical surgery that will remove the diseased portion of her brain.

“This is probably our only help,” Mikie Jones said.

Even successful surgery, doctors say, will come at a steep price.

“They said she will not be able to speak at all,” Mikie Jones said.

With that in mind, Aly is already learning sign language.

The vibrant smile Aly flashes belies the horrible disease she carries.

As she sat Friday watching her mother wax a classic automobile, Aly talked openly about the surgery doctors at UCLA Medical Center will perform Aug. 7.

“They’re going to put those things in my head,” Aly said, referring to electrodes used to help doctors gather information from a patient’s brain.

Through it all, Aly remains upbeat.

“The best part about this is that [after the surgery], I can look forward to being able to learn,” she said.