SOMERSWORTH — There is no known cure for Joubert Syndrome, a rare, little-understood genetic disorder that has stolen 13-year-old Kimberly Perreault's ability to speak or walk on her own.

McGill University, in Montreal, Canada, is the only specialized clinic in the world for the brain disease, which inhibits mental development and motor functions and affects about 200,000 children across the country.

In an effort to get Kimberly on the cutting edge of possible treatments, her family is organizing a fundraiser later this month to raise money to send her to McGill for a series of evaluations.

The fundraiser will be held Sunday, July 12, from 10 a.m.-5 p.m. at Millennium Park in Somersworth. It will feature a variety of activities geared toward children, from magic shows to exotic animal exhibitions to martial arts demonstrations.

Kimberly's mother, Jodi, said her family is putting on the fundraiser because her health insurance doesn't reimburse transportation costs. There are currently no clinics in the U.S. that specialize in Joubert Syndrome.

Jodi described her daughter's condition as a combination of autism and cerebral palsy, while "taking her voice away." Kimberly is still able to communicate through sign language and electronic devices like computers.

"She's a very intelligent child trapped in a body where she can't speak," Jodi said. "Imagine what that's like as a teenager."

When she was born, doctors gave Kimberly a dire prognosis. Her feet were positioned sideways; doctors had to break every bone in both feet and reposition them forward to heal. They said she would never be able to walk, and gave her only have a 40 percent chance of ever speaking.

But at the age of 7, Kimberly began to walk with the assistance of walkers and leg braces.

"Kim has a lot of determination," Jodi said.

As the disease limits her ability to control her muscles, Kimberly also suffers seizure-like tremors. She has no depth perception because her eyes work independent of each other, and she is confined to a wheelchair most of the time.

But the disease hasn't limited her ability to enjoy her favorite passions, Jodi said. Kimberly loves horses, comics, and her two dogs and three cats. When she grows up, she wants to draw comics or become a veterinarian.

"We always want her to strive," Jodi said.

She also likes hanging out with her brother, Josh, 16.

"I don't look at her as handicapped or disabled," Josh said. "To me, she's just my little sister."

Kimberly will travel to McGill at the beginning of August. She will be under the care of Eva and Frederick Andermann, a husband-wife team of doctors who have done extensive research on Joubert Syndrome.

Kimberly will undergo a series of tests to determine if any new medications or procedures can help her. Jodi said she is hoping something can be done to coax her daughter to speak.

"(Her speech) hasn't come, but we believe in our hearts it will," Jodi said.

Copyright © 2009 Geo. J. Foster Company.