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 2-4 children in one hundred thousand 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 past her life expectancy.
Family and friends held in April 2014 what they thought would be the one and only Family Fun Day to honor Erika and the first anniversary of her passing. This year will mark the fifth annual Family Fun Day.
The Beeing Erika Family Fun Day Fundraiser takes place at Tropical Park to honor and remember her, as well as to raise money for research on thed rare and always fatal disease.
The event includes several bounce houses, a live deejay, face painting, food trucks, popcorn and cotton candy concession stands, a vendor area, raffles and special performances by local artists. The One Blood Bus, and Miami-Dade Animal Services Adopt-a-Pet will be on site.
In 2015 the event started to include a car meet/exhibit with local car clubs. This part of the event has come to grow bigger each year.
The year’s event will take place on Apr. 29 at Tropical Park between 11 a.m. and 4 p.m., and is open to the public. A $5 donation/admission fee is asked of anyone attending. The fee for each car is $20 to include the car and its passengers.
You can google Erika Spaide for various articles about her life, as well as visit her Facebook page at www.Facebook.com/ErikaSpaide.
