Parents sponsor 5-K run-walk for Rett syndrome


April 26, 2001|By Joni Guhne | Joni Guhne,SPECIAL TO THE SUN

WHEN 3-YEAR-OLD Kate Offutt was born, she was a beautiful, healthy baby - the perfect addition to an ideal family, with her parents and big brother, Scott, then 4 years old.

But that perfect world came crashing down when her parents were told, little more than a year later, that their precious daughter had Rett syndrome, a devastating, incurable neurological disorder that disrupts the ability to use hands, to speak, to walk, and often to comprehend.

In an effort to educate the public about Rett syndrome and increase funding for research for a cure, parents Bill and Kim Offutt are sponsoring the second annual 5-K Run and Walk for Rett Syndrome on Saturday morning at Kinder Farm Park, where Bill is superintendent.

All proceeds go to the International Rett Syndrome Association, based in Clinton, Prince George's County.

Kate's story is like those of many other so-called "Silent Angels" victimized by Rett syndrome.

By the time she was a year old, she was babbling happily, saying her first sounds, and feeding herself while sitting in her highchair. Life appeared to be perfect.

"She's beautiful," says her mom, "and she was perfectly normal until 16 months. `I don't have to tell you how healthy she is,' her pediatrician would say when we took her for her checkups."

But at 16 months, something strange began to happen: Kate started dropping everything she tried to pick up, and her parents realized they weren't hearing the wonderful sound of her voice. The condition is not progressive, but regressive, says Kim Offutt - and it all happened in less than two weeks.

The concerned parents rushed their child to the pediatrician, who immediately sent them to a developmental pediatric specialist associated with Children's Hospital in Washington.

The specialist sent them to his mentor, Dr. Sakkubai Naidu, an authority on Rett syndrome.

Named in 1983 for Dr. Andreas Rett, the Austrian physician who first identified the condition in the 1960s, Rett syndrome is officially described as a neurological disorder seen almost exclusively in girls between the ages of 9 months and 18 months. It causes the loss of purposeful hand movement and the ability to speak. Many are unable to walk and suffer seizures and scoliosis.

"Babies with Rett have a defective gene on an X-chromosome," says Bill Offutt. "It occurs in one in 15,000 births."

The defective gene was identified in the fall of 1999, weeks before Kate was diagnosed by Naidu, who works at the Kennedy Krieger Institute in Baltimore, and to whom children are brought by their parents from around the world.

Kim Offutt says they were lucky because they received a diagnosis within a month. Because the condition is often confused with autism and cerebral palsy, diagnosis sometimes does not occur until a woman is an adult, in her 20s or 30s.

The condition varies widely among patients: Some are profoundly mentally disabled, she says, while others are able to take college-level courses using a pointer.

"For the most part, she's a very happy child," Mrs. Offutt says of Kate, adding, "The future is a big unknown. Some girls gain back some skills."

Kate is enrolled at the county's Ruth Parker Eason School in Millersville.

"We're hoping by getting her into therapy while she's young, we can save whatever she has. Kate can't talk to you, but she has a very strong eye gaze," her mother says - big, blue eyes to let her family know what she wants.

"We're trying to make others aware of the condition," she says, "to help other people understand and perhaps recognize the syndrome in their family or in a friend's child."

Through the efforts of people including actress Julia Roberts, whose close friend has a daughter with the condition, Rett syndrome is receiving much-needed publicity.

Race/walk registration begins at 8 a.m. Saturday at the River Birch Pavilion. The race begins at 9 a.m. and the walk at 10:30 a.m.

Jeff Hunter, a social studies teacher at Severna Park High School, is assisting with the event.

Registration is $15, and T-shirts will be given to the first 250 people who sign up.

Information: 410-544-0982.

Bundy benefit

Saturday's auction to help with the medical bills and other expenses of Chesapeake Bagel Bakery worker Henry Bundy III brought in $4,200, reports event co-chair Kayleen Weinman-Clute. "Calls are still coming in."

Bundy, 25, who has a brain tumor, was unable to attend. "Henry had chemo on Friday and stayed in the hospital," she said.

Weinman-Clute expressed thanks to members of the Severna Park High School Key Club who volunteered to help with the auction and the cleanup afterward.

Donations may be made to the Henry Bundy III Fund in care of First Union Bank, 585 Ritchie Highway, Severna Park 21146.

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