A family will never forget the kindness of Mark Hamill, who met their dying son as the master Jedi Luke Skywalker from Star Wars, and made his lifelong dream come true.
When John Sikorra turned seven, he started struggling with his eyesight. Expecting his sight would be corrected with glasses, his parents took him to a doctor, where they learned he had a rare neurological disease called Juvenile Battens Disease (JNCL) and it wouldn’t just steal his sight. It would also rob him of his memories and soon, his young life.
Born a healthy baby to his parents Joe and Lori Sikorra, John spent the first few years of his life like every other little boy. He played baseball, rode his bike, and watched cartoons on the weekend with his baby brother, Ben, who was later diagnosed with Battens, a degenerative fatal genetic disease.
“Around 1998, my son, John, was diagnosed with a very rare genetic disorder called juvenile Batten’s Disease (JNCL),” said his father Joe Sikorra, a former police officer turned therapist. “The disease robs kids of their vision first followed by cognitive motor function. Typically kids die in their late teens, early 20s. It is a very complicated disease and most doctors aren’t that familiar with it. So we lived in the moment, did as much as we could.”
Learning that a treatment for Batten may be available in the future, but not in their children’s lifetime, was “devastating and isolating.”
Testing the parents with two dying sons, Joe, a Catholic podcast host, told TODAY, “How do you imagine life going forward when this is presented with no hope for a cure or treatment?”
After their boys were diagnosed, Joe said that life “turned dark for all of us,” but then he and Lori shifted their focus on making life the best it could possibly be for their family, and 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.”
John’s condition rapidly declined over the years, first his vision, then seizures, loss of motor function and cognitive functions.
Despite his memory loss, the young man would never forget the epic Star Wars saga, that he watched through his childhood, and he wanted nothing more than to meet Luke Skywalker, the greatest Jedi in the galaxy.
And Joe was willing to travel the universe to make it happen.
Knowing it would be difficult, perhaps impossible, Joe reached out to his friend, the only one he knew in the industry, Ed Solomon, a screenwriter best known for Men in Black and Bill and Ted’s Excellent Adventure.
Not knowing Mark Hamill personally, Solomon set out to help.
Reaching out to his agent, Solomon explains on Twitter that he “…explained that this lovely boy watched Star Wars every day and wanted to meet NOT Mark Hammill, but, rather, the actual CHARACTER that he played (the boy’s own mental state had devolved past the point of being able to grok that Luke was fictional).”
The agent “begrudgingly said he’d call Mark, but also said not to get my hopes up.”
Less than five minutes later, Hamill, who’s known for his generous heart, called Solomon, immediately saying, “yes,” and made plans to meet with John.
That next day, Solomon and Sikorra, along with John and Ben, met Hamill in a park for part of their day.
John’s mind had deteriorated so significantly that he was unable to make the distinction between Hamill and the character Luke Skywalker, but the actor nailed his performance as a patient Jedi master.
“Mark spoke to John simply and directly and with utter dignity. John would ask the same question three times in a row, and Mark would answer the same way every single time,” Solomon shared when speaking with Hollywood Reporter.
Joe adds, “Mark was just super patient and kind. It was one of those beautiful experiences. It is very humbling, this disease. You have got to let go of your normal expectations for you and your kids and family. In the midst of struggle and tragedy, it was those points of connection that makes you feel loved and less isolated. Mark was very kind, ‘no rush, my time is your time.’”
But the story doesn’t end there.
When Hamill asked John if he had any final questions, the young man said, “Can I meet Princess Leia?” To which Hamill replied, “I’ll ask.”
Solomon said he thought that bringing in Carrie Fisher would be impossible.
“And Mark called me later that day and said ‘Princess Leia would be happy to meet John.’ I told her about the family. She got very emotional about the unfairness of things in life. And she said, ‘I only have two questions: Where and when?’”
Sadly, John’s condition quickly worsened so the meeting with Princess Leia never happened.
John died September 24, 2015, only one month after turning 24.
“John lived courageously,” Joe said. “Luke would have been very proud of him. He changed lives with his love and very presence.”
Neither Joe nor Solomon spoke publicly about the meeting until 2017, when there was so much negativity in the world that Solomon decided to share something inspiring. “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 by saying, “Ive been so lucky–feel it’s my duty 2 give back in any way I can. Much prefer visits 2 hospitals than talk shows. Heartbreaking but inspirational–makes my career seem trivial in comparison–Wish I could do more.”
Joe said that John meeting Hamill is a day the family will always treasure.
“It was one of those very touching, moving things,” said Joe, the author of “Defying Gravity,” a book that donates all proceeds to the Beyond Batten Disease Foundation to fund research and support others living with Battens. “And in that moment, it raised John up and made him feel good and important and loved.”
It’s also a memory that Hamill will never forget. In 2018, he Tweeted, “Meeting @JoeSikorraShow & Lori’s sons John & Ben was unforgettable for me. Such courage & optimism in the face of unthinkable adversity! I can’t wait to read more about this inspirational family.”
As for little brother Ben, his dream of going to college became a reality in 2016.
His parents teamed up with friends at Californian Lutheran University, that designed a whole program for the then 21-year-old Ben, accommodating his disabilities and allowed him an inclusive educational environment.
The last update we have about Ben is from a 2020 Twitter post, where Joe writes, “Years ago I didn’t know if my son would still be alive. But here we are, still living the adventure. Life is precious and fleeting. Let your hearts be filled with gratitude for the gift.”
This is truly a tragic story and we cannot imagine the pain experienced by the Joe and Lori Sikorra in having two sons diagnosed with the same cruel disease.
We wish there were more people out there like Mark Hamill, who eagerly made John’s dreams come true. And as for mom and dad, it’s beautiful that they also helped Ben achieve his dreams. Our thoughts go out to the family and cheers to Hamill for being such an inspiration!
