One family will never forget what actor Mark Hamill did for their dying son.
Joe Sikorra's son John's memory eroded from a degenerative, fatal disease, and the teen could no longer distinguish reality from fiction — but in his heart, he remembered a childhood of watching "Star Wars" movies and playing with action figures. His dad reached out to the one "Hollywood" person he knew in hopes of somehow making a connection with Hamill.
"John had always loved 'Star Wars,'" said Sikorra, a Catholic podcast host, family therapist and father of two. "I think he identified with the whole idea of the fight between good and evil, courage and despair."
For a family that understands all too well the struggle between light and dark, Hamill's act of kindness would mean the world.
Living with Batten disease
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. 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 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."
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.
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.
"The agent begrudgingly said he'd call Mark, but also said not to get my hopes up," Solomon wrote when he told the story on Twitter in 2017. "Ninety seconds later, I got a call from @HamillHimself, who immediately said yes and gave me his home address."
Meeting Luke Skywalker
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. His younger brother Ben is still living with Batten disease.
"John lived courageously," Sikorra said. “'Luke' would have been very proud of him. He changed lives with his love and very presence."
Neither Sikorra nor Solomon told the story of meeting Hamill publicly until 2017 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."
'Life is a gift'
Sikorra has written a book chronicling his family's experience raising two children with Batten disease, "Defying Gravity." 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. "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, visit the Beyond Batten Disease Foundation.
This story was originally published in 2017 and has been updated.