Help combat rare disease

According to the National Institute of Neurological Disorders and Sroke, Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians may notice a previously normal child has...

By P. Scott Cunningham

May 28, 2009

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According to the National Institute of Neurological Disorders and Sroke, Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented, and the disease is often fatal by the late teens or twenties. In short, it's pretty devastating.

Yet it's rarely struck in Miami. Today the family of Erika Spaide, who according to them is the only little girt in South Florida with Batten Disease, is having a garage sale to raise funds for her treatment. The event will also feature a live performance by acoustic band The Coffee House Gypsies.
Sun., May 31, 10 a.m.-2 p.m., 2009

P. Scott Cunningham

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