Christopher Velona, founder of Project Sebastian, said his son Sebastian was diagnosed with epilepsy as a child, but then started losing his vision, along with his cognitive and physical abilities.
Velona believed there was something else wrong with his son.
After being misdiagnosed, Velona found out Sebastian had CLN8-Batten disease, a rare neurodegenerative disorder that affects the nervous system, limiting motor and cognitive abilities, according to the Orphanet Journal of Rare Diseases.
As Sebastian became older, Velona realized his son was aging out of clinical trials with no cures or any type of treatments for his disease in sight.
“So, we found a niche that nobody was doing and that was a support group for families like mine to navigate through this horrible disease and to find others and support each other,” Velona said.
Now with the rallying community support, Velona was able to host Project Sebastian’s Rare Warrior 5 X 5 Challenge event for the last two years.
Dozens of runners from all ages laced up their sneakers to participate in the second annual Rare Warrior Challenge at Valencia Heritage Park Saturday morning to raise funds, promote awareness and provide support for the families dealing with rare diseases and special needs in Santa Clarita.
The Rare Warrior 5 × 5 consisted of three races. One was a 5k in which runners were guided through the San Francisquito Canyon trails, and the 5-mile run that started at the park and led the participants up Copper Hill Drive, down the trail at the back side of the Paseo Club, and back up to Newhall Ranch Road to finish back at Valencia Heritage Park.
The third race was called the All Abilities Half K, a shorter race designed for people with disabilities in wheelchairs, crutches or any device that assists them in crossing the finish line.
“All the races today are just all for fun,” Velona said. “Nothing is timed. It’s just family fun and entertainment.”
Santa Clarita City Councilwoman Laurene Weste was in attendance and spoke about how important the work Velona was doing for the special needs and rare disease community in Santa Clarita.
“This incredible father-and-son team, that hopefully everyone becomes familiar with, hopefully will get Batten disease familiar with people so that they understand the work that’s being done by Project Sebastian,” Weste said, “and support the other rare diseases that people don’t know about but are affecting lives.”
Weste also encouraged the participants to try their hardest in their races no matter which event they chose.
“We know that you hold in your heart someone you know who may be suffering,” Weste said. “So, channel your energy and your strength to try to finish your race and remember them as you cross the finish line because you’re making a difference.”
Runners, whether they were running in groups or by themselves, were awarded medals and shirts after they finished.
Sebastian Uribe-Loza, a recent high school graduate who participated in last year’s event, finished in first place for the 5k run and said he was encouraged to come back and do it all over again.
“I came out and came to show my full support for Project Sebastian,” said Uribe-Loza. “It’s very nice to see and give good spirits to the community all around for such causes.”
Despite being grateful for the community participation in his event, Velona said he’s honored to be part of the nonprofit community in Santa Clarita.
“The impact on my family alone, I can’t even tell you how amazing it has been,” Velona said. “We just hope to keep spreading the word and building … the support group system and have more people come out.”
Project Sebastian, in collaboration with Henry Mayo Newhall Hospital, hosts rare disease support groups at 11 a.m. Tuesday on Zoom, along with in-person meetings as well.