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  • Sam Brown, 9, is in a wheelchair 100 percent of the time. In 2008, he was diagnosed with Friedreich's ataxia, a rare disease that affects the muscles and heart.

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May 22, 2010

Family of local boy raises money to benefit others

Ada Evening News

Ada — By Brenda Tollett

Associate Editor



As a young child, Sam Brown's mother said the family never suspected anything was seriously wrong with their child.

His frequent falls were attributed to him being "a little on the clumsy side," she said. However, as he grew older and his gait problems became more noticeable Lee Anna Brown and her husband, Wade, knew something was wrong.

It would take one and one-half years and eight different doctors before they found an answer.

In November 2008, genetic testing confirmed Sam has Friedreich's ataxia. He was 8 at the time.

"We thought she (the doctor) was wrong," Lee Anna Brown said. "All the other doctors were wrong."

Friedreich's ataxia is a rare disease that is inherited. "It is a progressive nuromuscular disease," Lee Anna said.

According to the National Institute of Neurological Disorders and Stroke, Friedreich’s ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from gait disturbance and speech problems to heart disease. It is named after the physician Nicholaus Friedreich, who first described the condition in the 1860s. “Ataxia,” which refers to coordination problems such as clumsy or awkward movements and unsteadiness, occurs in many different diseases and conditions.

Friedreich’s ataxia, although rare, is the most prevalent inherited ataxia, affecting about one in every 50,000 people in the United States. Males and females are affected equally.

Symptoms usually begin between the ages of 5 and 15 but can, on rare occasions, appear as early as 18 months or as late as 50 years of age.

Most people with Friedreich’s ataxia develop scoliosis (a curving of the spine to one side), which, if severe, may impair breathing.

The rate of progression varies from person to person. Life expectancy may be affected, and many people with Friedreich’s ataxia die in adulthood   from the associated heart disease, the most common cause of death. However, some people with less severe symptoms live much longer, sometimes into their sixties or seventies.

Lee Anna said her son currently shows no signs of heart disease or diabetes, two common symptoms of Friedreich's ataxia. However, he does have scoliosis, a curving of the spine, and will need surgery in the near future.

Sam, 9, recently completed third grade at Allen Public School. His favorite activities include playing video games and being outdoors with his little sister, Kathryn, and older sister, Kinsey.

In addition to family, friends, community and faith, Lee Anna said the Muscular Dystrophy Association has been tremendous in helping her family cope with their daily struggles.

"The MDA clinic staff in Oklahoma City have been outstanding," she said. "They have been a pivotal part of us helping cope and deal with everything."

"Outside of Christ, research is our only hope right now," she said. She said her faith has grown tremendously since Sam's diagnosis.

To help support that research, the Brown family and friends are hosting a garage sale Memorial Day weekend (May 29-30) at Allen. The sale takes place in a building behind the cup factory (the incubator area) on State Highway 1 at Allen.

A variety of items will be for sale, including crafts, FARA (Friedreich's Ataxia Research Alliance) T-shirts and "Hope" floats - instead of Coke floats.

Lee Anna said proceeds from the fund-raiser will be split between FARA and MDA clinic in Oklahoma City.

For more information about FARA visit www.curefa.org.

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