Parents

'Star Wars' star Mark Hamill's visit with dying boy restores faith in the Force

Around the country, "Star Wars" fans little and (sometimes very) big are pulling out their lightsabers and rolling their hair into buns in anticipation of the latest installment in the series, "The Last Jedi." Finally, we'll find out where the legendary Luke Skywalker — played by Mark Hamill, who originated the role in 1977 — has been all this time, and if he is still on the light side of the Force.

But Los Angeles-based Catholic radio show host and father of two Joe Sikorra already knows the answer to that question, at least when it comes to Hamill himself. In a story that just surfaced in past weeks on Twitter and then the Hollywood Reporter, Hamill once generously surprised Sikorra's terminally ill son and gave him a chance to meet "Luke Skywalker" before his death.

Joe Sikorra
Joe Sikorra's sons, John and Ben, were diagnosed with the fatal and progressive Batten disease when they were children. The disease affects the nervous system and causes the loss of vision and motor and cognitive control as well as seizures.

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. Children with Batten lose their vision and suffer from seizures and a loss of motor and cognitive control before their early deaths. The Sikorras' younger son, Ben, was tragically diagnosed with Batten disease as well.

Doctors told the Sikorras that a treatment for Batten might be possible in the future, but not in their children's lifetimes. "It was devastating and isolating," Sikorra told TODAY Parents. "How do you imagine life going forward when this is presented with no hope for a cure or treatment?"

Sikorra said that initially after the diagnoses, life "turned dark for all of us," but then he and his wife Lori decided to focus on making life the best it could possibly be for their family, to "live in the moment and to live joyfully."

"We made a choice to maximize life and do what we could to take pleasure in small things," he said. "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."

Joe Sikorra
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.

One of those moments came after John, then a young teenager, asked his dad if he could meet Luke Skywalker. He had already lost his sight by then and most of his short-term memory. But because he had spent most of his childhood watching "Star Wars" and playing with his toy lightsabers and action figures, his connection to the movie had stayed with him.

"John had always loved 'Star Wars,'" said Sikorra. "I think he identified with the whole idea of the fight between good and evil, courage and despair."

Sikorra asked his college friend, screenwriter Ed Solomon ("Men in Black," "Bill & Ted's Excellent Adventure") — the only person he knew in Hollywood — if he could help him reach Hamill. Solomon didn't have any direct connection to the actor, but he reached out to his agent.

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"The agent begrudgingly said he'd call Mark, but also said not to get my hopes up," Solomon wrote on Twitter. "Ninety seconds later, I got a call from @HamillHimself, who immediately said yes and gave me his home address."

Hamill met John with Sikorra and Solomon at a park in Malibu, where he spent hours answering John's questions in character as Skywalker. "At that point, John couldn't distinguish between the actor and the character," explained Sikorra. "Mark answered all John's questions about Princess Leia and spaceships, and he was just very, very kind."

John passed away at the age of 24 in 2014, and neither Sikorra nor Solomon told the story of meeting Hamill publicly until a few weeks ago when, depressed by all the negative news coming out of Hollywood and the world, Solomon decided to share it on Twitter. "In some 30-odd years in this business, this may be the story I'm proudest to have been a part of," he wrote.

Hamill responded to his tweets with his own statement about the experience. "I've been so lucky — feel it's my duty 2 give back in any way I can," he wrote. "Much prefer visits 2 hospitals than talk shows. Heartbreaking but inspirational — makes my career seem trivial in comparison — Wish I could do more."

Sikorra has written a book chronicling his family's experience raising two children with Batten disease, "Defying Gravity," that debuts this spring. All proceeds from the book will go to the Beyond Batten Disease Foundation to fund research and support other families battling Batten.

"We have managed to have a grace-filled life," said Sikorra, whose younger son Ben is now 23 and living with the disease. "The 'advantage' that this diagnosis has given us was that we were able to recognize how precious life is, and how fleeting. We can focus on our relationships with each other, our love, our laughter, our connections with our family, our connections with our faith."

And just like the epic saga his son loved so much as a child, Sikorra said that in many ways, their family's story is as universal as it is unique. "We are all going to suffer," he said. "We’re all going to experience loss, and death, and health crises. To me, it’s just about the fact that if you can really be aware that life is a gift, it can’t help but change how you choose to relate to other people and your own life."

To learn more about Batten disease and contribute to research and possible treatments, visit the Beyond Batten Disease Foundation.

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