By Jennifer Best/Contributing Writer Email this story Print this story

Lucas Appleton, 9, is struggling with the challenges of Freidreichs ataxia. A fundraising barbecue and dance concert will be held Sunday. //Phil Klein/Contributor

By anyones account, Lucas Appleton of Grover Beach is a spunky, active, 9-year-old boy. He revels in building with Lego bricks, playing with big brother William and watching SpongeBob.

Hes a charmer, thats for sure, said his mother, Casandra Appleton.

In the years to come, hell need all the spunk and charm he can muster as he struggles with the challenges of Freidreichs ataxia, or FA, a rare, crippling form of muscular dystrophy thats robbing Lucas of his mobility. Approximately 13,000 individuals have been diagnosed with FA in the United States, according to the Muscular Dystrophy Association.

Hes gone from being a very active, agile little kid to one who stumbled often to using a walker most of the time, or a wheelchair for long days, said Linda McClure, his godmother.

While there is no cure for the disease, friends and family members believe there are services that could help Lucas preserve his independence, and theyre willing to put themselves out there to help raise funds for him.

McClure, owner of American Property Services, in conjunction with Mongos Restaurant and Sports Bar, 359 W. Grand Ave., Grover Beach, will hold a fundraising barbecue and dance concert from 10:30 a.m. until closing Sunday.

Big brother William Appleton will sing Amazing Grace, Anthony Salas and his band, Naughty Ruby, will perform, and Mongos will provide the DJ service and the band Smokin Gunz for late afternoon and evening entertainment. More bands are encouraged to donate their services to this event as well.

There is no cover charge for the event. Instead, funds raised from the sale of food, alcohol and raffle tickets will benefit Lucas. Only 200 tickets, at $100 each, will be sold. Prizes include a flat-screen TV, massages, a beer keg refrigerator and, for the last ticket drawn, $5,000 in cash.

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A boy’s struggle with Freidreich’s ataxia