![]() ![]() ![]() He had already lost his sight by then and most of his short-term memory. One of those moments came after John, then a young teenager, asked his dad if he could meet Luke Skywalker. "Because we opened ourselves up, rather than giving in to despair and depression - though we definitely went through depressed times - we have had some amazing moments all throughout our journey." John Sikorra passed away from complications of Batten disease at the age of 24, but during his life he fought to attend high school, where he was able to letter in baseball with the help of the high school coaches despite his blindness, and to win the title of Homecoming King. "We made a choice to maximize life and do what we could to take pleasure in small things," he said. "How do you imagine life going forward when this is presented with no hope for a cure or treatment?" "It was devastating and isolating," Sikorra told TODAY Parents. Joe Sikorraĭoctors told the Sikorras that a treatment for Batten might be possible in the future, but not in their children's lifetimes. The disease affects the nervous system and causes the loss of vision and motor and cognitive control as well as seizures. Joe Sikorra's sons, John and Ben, were diagnosed with the fatal and progressive Batten disease when they were children. ![]() The Sikorras' younger son, Ben, was diagnosed with Batten disease as well. Children with Batten lose their vision and suffer from seizures and a loss of motor and cognitive control before their early deaths. Joe Sikorra's son John was diagnosed with juvenile Batten disease, a progressive and fatal genetic disease that affects the nervous system, when he was just 7 years old. "I think he identified with the whole idea of the fight between good and evil, courage and despair."įor a family that understands all too well the struggle between light and dark, Hamill's act of kindness would mean the world. "John had always loved 'Star Wars,'" said Sikorra, a Catholic podcast host, family therapist and father of two. ![]()
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