Batten disease is a rare, fatal neurodegenerative disorder that begins in childhood. Symptoms include gradual onset of vision problems, seizures, behavior changes, slow learning or regression, repetitive speech, clumsiness, or stumbling.
Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight, speech and motor skills.
Eventually, children with Batten disease become blind and bedridden. This debilitating fatal disease affects 2 to 4 children in 100,000 and claims a child or two per week. There is no cure or treatment at this time and is always fatal.
Erika Spaide, was diagnosed with Batten disease at the age of 5. And although the disease deteriorated her body, it did not take her bright charismatic soul and contagious smile that lit up a room.
On Apr. 27, 2013, Erika passed peacefully in her home with her family and friends by her side. She was just two months shy of her 21st birthday, and she lived almost seven years beyond her life expectancy.
With the three-year memorial of Erika’s passing, preparatiosn are being made for a Family Fun Day Fundraiser at Tropical Park to honor and remember her, as well as to raise money for research on this rare disease.
The event will include several bounce houses for ages 2 and older, a live deejay, face painting, popcorn and cotton candy concession stands, and small vendor area. There will be raffles from Tacos and Tattoos, Kidstance and others, as well as special performances by Paramount Dance Studio, Trendz Dance Technique Center, as well as other local artists. The famous Frankie’s Pizza, Liquid N2 Ice Cream and Monster Burgers food trucks will be there.
And for car enthusiasts, there will be local car clubs, along with some specialty car shops, showing off their vehicles this year.
The event will take place May 1 at Tropical Park, 7900 SW 40 St. (Bird Road main entrance) between 11 a.m. and 4 p.m., and is open to the public. A $5 donation admission fee is asked of anyone attending. A free raffle ticket will be given to anyone who reposts the flyer, located on facebook page, when you hashtag #BeeingErikaFFD2016. Visit her Facebook page at www.Facebook.com/ErikaSpaide for more information. To give a donation, be a vendor or entertainment, you may contact via email at Beeingerika@aol.com.