A bill sponsored by State Senator Scott Wilk, R-Santa Clarita, which would designate the first weekend in June as Batten Disease awareness week, passed the California Senate Monday, moving the initiative one step closer to law.
Wilk was urged to author the measure to see that citizens and families who are affected by the many forms of Batten Disease receives complete and proper treatment at a reasonable cost, according to a statement from his office.
“This rare genetic disease robs children of their childhood and parents of their child,” said Wilk. “SJR 25 calls attention to the disease, the impact it has on families and hopefully compels the federal government to continue funding research on this and other rare diseases.” Batten Disease is a rare fatal disease that affects two to four new newborns out of every 100,000 births in the United States.
Symptoms first begin when a child is between the ages of 5 and 10, and include behavioral changes, seizures, blindness, intellectual decline and loss of speech. The disease ultimately leads to premature death. SJR 25 recognizes researchers, organizations, medical professionals and donors who have continued to grow awareness for Batten Disease.
On average, the process to reach the correct diagnosis for a patient with a rare disease could take up to seven and a half years, visits with numerous physicians, and multiple misdiagnoses.
Santa Clarita resident Chris Velona, a constituent of Wilk’s brought the issue to his attention, said he was calling for assistance for his son, Sebastian Velona, who was Diagnosed with Batten CLN8 when he was 7.
Project Sebastian, an organization that works to expand research for treatment and a cure for Batten Disease, was named after the child, who was diagnosed at a young age.
“The federal government has not done enough to provide essential funding for rare diseases, such as Batten Disease, and ninety-five percent of the 7,000 rare diseases still have no FDA-approved treatment,” said Wilk. “I cannot imagine the pain a family must endure watching their precious child suffer while doctors struggle to determine the cause. It is crucial that the California State Senate call attention to organizations, such as Project Sebastian and the Sebastian Velona Foundation, that serve to bring people together for the united purpose of actively pursuing improvements in their communities.”
Chris Velona joined the lawmaker on the Senate floor when the bill passed, thanking the legislature for their support.
“We have worked very hard to raise awareness of this horrible disease – for my son’s sake and for others just starting this journey. We are so grateful for Senator Wilk’s efforts in moving the ball forward,” Velona said. “Every day I have with Sebastian I treasure. It is so important to help others afflicted with this disease and work to find treatment and hopefully one day a cure.” SJR 25 will now head to the Assembly for consideration, and if passed will head to the governor’s desk to be signed into law.