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 two to four children in 100,000 and claims a child or two per week. There is no cure or treatment at this time and it 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 passed her life expectancy.
With Erika’s one-year anniversary of her passing approaching, her family is organizing 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, a live deejay, face painting, and Frankie’s Pizza food truck, Liquid N2 Ice Cream and Monster Burgers food truck will be in attendance. There will be popcorn and cotton candy concession stands, pony rides, a small vendor area, raffles and special performances by local artists.
The event will take place Apr. 27 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.
You also can visit Erika’s Facebook page at www.Facebook.com/ErikaSpaide.