Santa Clarita residents were invited Wednesday to Priscilla’s Salon for the Extensions Of Love event to support the Sebastian Velona Foundation.

Many community members came out to Priscilla’s Salon Wednesday evening to make a pledge towards finding a cure for Batten CLN8.

Batten CLN8, a fatal and degenerative neurological disorder is a rare disorder with no cure and would leave Sebastian Velona, a 13-year old Santa Clarita teen, blind, immobile, cognitively impaired and ultimately dead by his late teens or twenties.

For a donation of 10 dollars attendees were able to have hair stylist add a bit of blue or pink to show their love and support.

After several years and treatments Sebastian was diagnosed with Batten CLN8 a fatal degenerative neurological disorder.

Teri Fox, Sebastian’s mother, gave some backstory to her son’s trials and tribulations dealing with Batten disease.

“My son Sebastian was born normal, whatever normal is. At age 4, he had his first seizure and around age 7, he started losing his vision,” said Fox. “So we went to countless doctor and UCLA to his neurologist to have DNA testing.”

Ever since Sebastian was born, his family felt he had something special inside. By the time he was able to walk and talk, Sebastian was sure he could heal people with his hugs, according to family members.

“For a long time, we would just smile and laugh and say how cute and sweet he was, but Sebastian would get upset if we didn’t believe him. He insisted that he had healing hug powers,” said Fox.

In 2017, Sebastian and his family launched a campaign to raise funds for Batten CLN8 research and a therapy program called Healing Hugs.

Many businesses in Santa Clarita joined forces to support the Sebastian Velona Foundation with their products, services and time.

Nothing Bundt Cakes, Sweet Beams Ice Cream and Priscilla’s Salon all donated time and energy as well as 50 percent of the proceeds from various fundraising days to benefit the Healing Hugs campaign.

Kim Benton, an aesthetician at Priscilla’s Salon, said she hosted the  ‘Extensions of Love’ event to give back to the community.

“All the money we raise today is going to be donated to cure batten’s disease,” said Benton at the Wednesday event. “We are big believers in helping out the community.”

Dozens of gift baskets with goods and services were donated by businesses in the community to help find a cure for Batten Disease.

Anyone looking for more information about the Sebastian Velona Foundation information on how to donate can click here.

KHTS FM 98.1 and AM 1220 is Santa Clarita’s only local radio station. KHTS mixes in a combination of news, traffic, sports, and features along with your favorite adult contemporary hits. Santa Clarita news and features are delivered throughout the day over our airwaves, on our website and through a variety of social media platforms. Our KHTS national award-winning daily news briefs are now read daily by 34,000+ residents. A vibrant member of the Santa Clarita community, the KHTS broadcast signal reaches all of the Santa Clarita Valley and parts of the high desert communities located in the Antelope Valley. The station streams its talk shows over the web, reaching a potentially worldwide audience. Follow @KHTSRadio on Facebook, Twitter, and Instagram.