May 7th: Batten Disease Awareness Day in Miami-Dade County
Proclaimed by Mayor Carlos Gimenez, Chairman Esteban Bovo, Jr., and Commissioner Rebeca Sosa
(Miami-Dade County, Florida) - To honor the memory of Erika Spaide who passed away in 2013 at the young age of 20 after a lifelong battle against Batten disease, Miami-Dade County Commissioner Rebeca Sosa will issue a proclamation to raise awareness about the incurable, deadly disease. Batten Disease is a rare genetic disorder that affects the nervous system causing those diagnosed to shake, twitch, and suffer seizures. According to the National Institute of Neurological Disorders and Stroke, children with Batten disease may become blind, bedridden, and demented.
While the disease is relatively rare, it hit home in Miami-Dade County when Erika was diagnosed at the young age of 5. Doctors warned that Erika would be developmentally delayed when at 6 months-old she did not develop at a normal pace however, it was not until years later that doctors diagnosed Erika with Batten Disease. Symptoms of the disease become apparent at different ages, and its speed of progress varies from patient to patient. Sadly, Batten Disease is fatal by one’s late teens or twenties.
“Erika’s story and passion for life reminds us that we must continue raising awareness and promoting medical research about rare diseases such as Batten Disease,” stated Commissioner Sosa. “I call upon all residents, especially the parents of our community, to better educate themselves about Batten Disease.”
The proclamation designating May 7th, 2017, as Batten Disease Awareness Day in Miami-Dade County will be presented on Sunday, May 7th, 2017 at 12:30 pm at the Family Fun Day Event for Bee-ing Erika at Tropical Park, 7900 Bird Road.