Raising money, awareness for a boy in need
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When Vic and Leisa Nikolajevs' son Asher was diagnosed with Batten Disease/ Neuronal Ceroid Lipofuscinosis (NCL) five years ago, the Berlin Heights family was naturally stunned.
"It's a neurodegenerative disease that slowly takes his life," Vic said. "He was diagnosed five-and-a-half years ago. There is no cure for Batten Disease as of now. Stem cell research is working with that right now and that's our hope."
Batten Disease/NCL is relatively rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States.
Because the disease caused him to lose his vision very rapidly, Asher was forced to learn to read Braille. Today he is almost completely blind, with the prognosis eventually fatal.
The family's only hopes lies in research, which explains why it is holding the fundraiser "Asher Bash II Benefit Concert" from noon-9 p.m., Aug. 11, at Roeder Harley-Davidson in Sandusky.
"We are having a benefit concert for Asher," Vic said. "Five bands - Colin Dussault & The Blues Project, Mudflower, Caustik, Boomer X and Steve Brownell & Band - will be playing, and we'll have all kinds of raffle items and 50/50 raffles. We've got great donated items and there's also going to be a ëDash to the Bash' poker run in the morning."
Last year, "Asher Bash I" raised upwards of $20,000, with Vic saying every dime was donated to The Batten Disease Support and Research Association.
The family is hoping this year's event raises even more money, as well as plenty of awareness.
Ten-year-old Asher, who has an older brother Sam and enjoys playing with trains, is a third grader at Berlin Elementary. Vic said he's truly something special.
"He takes it amazingly," Vic said. "He's a strong little boy. He's gone blind in the last five years, and never once has asked why he's blind. He's an energetic, fun-loving boy that loves life."
Asher Bash II
WHEN: Noon-9 p.m., August 11
WHERE: Roeder's Harley-Davidson and Shifters on U.S. 250
COST: $5
INFO: actionforasher.com
You can't say stupid, meaningless things at the end of serious stories like this. E-mail John Benson at jbenson@funcoast.com.