Aug 3rd, 2019 ~ MyNewsLA.com
A 16-year-old from Santa Clarita diagnosed with a rare fatal and degenerative neurological disorder will throw a ceremonial first pitch before Saturday evening’s Los Angeles Dodgers-San Diego Padres game at Dodger Stadium.Sebastian Velona has been diagnosed with Batten CLN8. His father Chris said a scientist told him the disorder has no cure and would leave Sebastian blind, in a wheelchair, without the ability to eat on his own, speak and dead by his late teens or 20s.
The elder Velona formed Project Sebastian, a nonprofit organization dedicated to raising awareness of the disorder and funds for research and gene replacement therapy to treat Sebastian and other children diagnosed with Batten CLN8. The cost for gene replacement therapy is $3 million to $5 million per child, Chris Velona said.More information on Project Sebastian is available on its website, Projectsebastian.org.
Sebastian is throwing the first pitch in connection with the team’s Blue Wishes program, which grants wishes for fans, particularly those with life-threatening illnesses.
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