YUTAN – Oliver Egr is a giver, not a taker.
While dealing with a rare disease called Juvenile Batten’s Disease that has robbed him of his sight and begun to erode his motor skills and cause other issues, the Yutan youth has organized fundraisers to help children less fortunate than him.
Now, others are rallying around Ollie to raise money to fight Juvenile Batten’s Disease with a special event on Saturday, Sept. 21.
Last year, a band of friends and family formed what they call “Ollie’s Infantry” to raise money for Beyond Batten Disease Foundation, an organization that drives research into the disease. The funds also help pay for Oliver to participate in clinical trials, which are not covered by insurance, said his mother, Susie Egr.
They held a fun run/walk around Lake Wanahoo with stations that illustrated Oliver’s favorite things, like Bigfoot hunting, Native American artifacts, pirates and the famous movie character, Rocky Balboa.
This year, Oliver wanted to do something different, so he chose a color run, which is ironic since the teenager can’t see, said Egr.
“It’s strange coming from a blind child, but that’s what he envisioned,” she said.
While they loved holding the event at Lake Wanahoo last year, Ollie’s Infantry wanted to bring the event back to their hometown of Yutan. So this year, the Ollie’s Infantry Rock and Run will take place at Itan Park in Yutan.
Along with the color run, Oliver wanted some music, and not just any music. His taste in music is eclectic, ranging from Johnny Cash to Flo Rida. A local band, Bucka Ruse, is among his favorite bands, so he asked them to play.
Egr said the musicians in Bucka Ruse, a country/rock band with local ties to Yutan, were more than eager to be a part of the event.
“They’ve already asked Ollie what his favorite songs are,” said Egr.
The Rock and Run event will start at 5 p.m. with registration for the color run. A kick off party for the color run begins at 5:45 p.m. and the run itself starts 15 minutes later.
Barbecue served up by Vine Street Market and Wahoo Locker will be served starting at 6:30 p.m. There will also be a beer garden that opens at 7 p.m. Bucka Ruse will take the stage at 9 p.m.
The registration fee for the event are $35. Egr said pre-registration for the color run has ended, so anyone registering now will not receive a t-shirt, but late registrations are still welcome. T-shirts can be purchased the day of the event for $15, Egr said.
The registration also includes a packet of color for the pre-party and some items from the event’s sponsors, Egr said.
Oliver was diagnosed with Juvenile Batten’s Disease at age 6. The disease is one
of 7,000 rare diseases, which are defined as diseases, disorders, illnesses or conditions affecting less than 200,000 people. There is no treatment and no cure for 95 percent of rare diseases, Egr said, and only five percent have approved treatments.
Egr said the disease can be compared to having a child with Parkinson’s, Alzheimer’s, Lou Gehrig’s diseases and macular degeneration, all at the same time.
To register for the event, go to www.ollies-infantry-rock-run-fundraising-event-tickets-70088192671.