A Father’s Race Against Time for His Son

by | Jan 31, 2019 | Spotlight

 Chris Velona sits at his dining room table in his quiet apartment, holding his coffee and laying eyes on his long white board, extending from end to end, with notes marked in blue on his nonprofit foundation, Project Sebastian. The look on his eyes drops as his son, Sebastian Velona, walks in from his room, holding a baseball, “Dad…are we going to play catch today?” he says in a mumbled low sound.
As he excuses himself to speak to his son and get him a drink of water, Sebastian turns his head and sits on the edge of the couch. Chris hands him the cup with a straw and says, “We will play soon bud, just give me a couple minutes.”
Simple gestures seem to go a long way for Sebastian and Chris knows that those simple gestures are something he needs to hold on to.
Project Sebastian was started by Chris, in support to raise money to find a cure for Battens Disease for his son, Sebastian. “There are many people going through the same issues and hardships we are currently experiencing, and I want to find a way to help us all.” Essentially, it is a father racing against time to save his son from a fatal disease.
He pulls out his book of notes, a memoir of Sebastian’s combative journey with Battens Disease. It began when Sebastian was having seizures as a young boy. Being treated as Epilepsy they then noticed him having trouble with his vision. After multiple trips to UCLA (University of California, Los Angeles), Chris’ son was diagnosed with Retina Pigmentosa, an illness that would eventually lead to blindness. It became a snowball effect that led to his current diagnosis, Batten CLN8, a fatal degenerative neurological disorder.
He came across the Charlotte and Gwyneth Gray Foundation who were experiencing a similar situation with their daughter, fighting to find a cure for Battens Disease. He owes gratitude to their team as they have helped him launch Project Sebastian. “It becomes a family, unified to find a cure for our children.”
Always looking for help, Chris has resorted to working part-time and working full-time taking care of his son and his medical needs. “It’s more than a full-time job, it is my son.”
A voice comes from across the apartment. His brother Gage can be heard talking on the phone and playing video games. “He has been the best younger, older brother to Sebastian during all this.” Chris says with a look of compassion. His brother Gage, just a couple years younger, is always helpful and understanding, showing signs of maturity and extreme brotherly love towards Sebastian.
As Chris continues to look for opportunities to help his son, an angel has answered their prayers. Amicus Pharmaceuticals has bought the rights to all the Batten disease clinical trials that are currently underway at Nationwide Children’s Hospital in Ohio. Sebastian and 2 other boys will be included in the ongoing CLN8 trials using Gene Therapy replacement. Also with Super Bowl LIII coming up, Project Sebastian is raffling off two Super Bowl tickets, in which all proceeds will go back to help find a cure for Batten Disease, to continually fund a cure.
The entire family has been affected by Sebastian’s diagnosis. But everyone has remained strong. A family that has been brought together with time running out looks to find a solution to save their son, brother and best friend.
“The community of Santa Clarita has been amazing in their support of us and I am forever grateful. This has taken a lot out of us, but ultimately, he is my son and I am willing to do whatever it takes to save him.”
With a glimpse of hopefulness, he closes his notebook.