The first Batten Disease Awareness Weekend — an event which hopes to draw attention to a disease that kills thousands of children a year — will debut June 2, after Senate Joint Resolution 25 was approved last month.

On May 14, state legislatures adopted Senate Joint Resolution 25 (SJR-25), a bill that formally commemorates the first weekend of June of each year as Batten’s Disease Awareness Weekend.

Authored by State Senator Scott Wilk, R-Santa Clarita, the resolution was inspired by Sebastian Velona, a 7-year-old Santa Clarita resident who has been diagnosed with Batten Disease.

Wilk was made aware of the deadly disease and the need for more awareness after Chris Velona, Sebastian’s father, traveled to Sacramento and sought out support for his son, as well as the thousands of other children and their families who have been affected by the disease.

Batten Disease is a rare fatal disease that affects two to four newborns out of every 100,000 births in the United States.

Related: Santa Clarita Family Seeks Rare Brain Disease Diagnosis For Daughter

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.

“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.”

Wilk agrees that not enough is being done and is working to encourage the federal government to provide assistance to the affected families.

“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,” Wilk said. “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.”

Report a typo or error, email [email protected]

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.