Fourteen-year-old Sebastian Velona is a positive high school student who loves to play the drums and practice karate. He faces adversity head-on and tries to stay strong as fights his own degenerative neurological disorder.
In the fall of 2012 Sebastian was diagnosed with Batten Disease CLN8, a rare and fatal genetic disease that affects 2 to 4 of every 100,000 live births in the United States.
“There are variations to this disease denoted by the number and each disease has its own type of symptoms, but some of the commonalities are blindness, seizures, loss of fine motor skills, loss of balance, loss of muscle and bone growth, and eventually loss of speech, eyesight and the ability to eat,” Sebastian’s father Christopher Velona said.
When Sebastian was properly diagnosed there was no cure for Batten Disease and it seemed as though there was very little research being done, according to Velona.
“There was very little research because this is a rare disease,” Christopher Velona said. “You can have a lot of misdiagnoses.”
To help promote research of Batten Disease and find a cure for the variations of the disease, Christopher Velona and his family started the nonprofit organization Project Sebastian, www.projectsebastian.org, in 2012 in order to turn research and fundraising into action.
“[Sebastian] is very smart for his years,” Velona said. “He understands this disease and the consequences of it and he is a huge fan of Project Sebastian. He loves talking about it when he’s up for it.”
The organization is also working to educate the public about the little-known disease through events, projects and outreach.
“We feel at Project Sebastian that awareness is just as valuable as raising money to fund these gene therapy treatment,” Velona said. “It’s important to have discussions about what it is and what is happening. Each variant unfortunately has to have its own type of therapy, what works for one won’t work for others.”
This means that each strain of Batten Disease require different clinical trials and gene therapy treatments to find cures for each variant of the disease.
“It’s unfortunate that you can’t share treatments at this point,” Velona said.
Project Sebastian is working to replicate the success of other families who pioneered research and treatments for their own children, like the Charlotte and Gwyneth Gray Foundation that found a new gene therapy for their daughters who had Batten Disease CLN6.
Currently, Sebastian’s research for a possible treatment for CLN8 is at Nationwide Children’s Hospital in Ohio.
“It’s kind of taken a really great turn in the sense that we’re not just saving Sebastian, we’re going to save all these kids and create awareness that there is a potential option for these kids,” Velona said. “We’re truly looking for is someone that can get on board who can get the message out, that’s how you spread awareness.”
In addition to spreading awareness about the upcoming clinical trial, Project Sebastian also hoping to quickly fundraise as much money as they can to support Sebastian and other children undergoing the expensive treatment.
“Every dollar that is raised goes to Sebastian’s life and funding the cure,” Velona said. “The goal is to help as many children that are suffering from Battens Disease as possible. I would like to eradicate this disease, but I can’t do it all. I need help.”
Through a united front with his ex-wife Terri Hughes Fox, who started the Sebastian Velona Foundation and the Healing Hugs campaign, the blended family is working to eliminate the disease and save the life of not only Sebastian, but all children diagnosed with Batten Disease.
“The problem that we face is not so much the money but the time that is wasted. The most important thing is time because these kids deteriorate on such a fast rate that they lose out on a potential cure and the fundraising is what takes time,” Velona said. “We have to continually be vigilant in our charge, which will hopefully bring money which will bring trails which brings a cure for these kids.”
And the foundation’s is doing so one donation at a time from Santa Clarita Valley community members and the nation at-large.
“The community of Santa Clarita has been so generous with the donations and they are truly behind charities in this town,” Velona said. “It’s my honor to be a part of a great foundation. Secondly it’s my duty as a father to do anything and everything possible for your children so to me it means it means everything and it is everything.”
On Twitter as @_ChristinaCox_