Terminally Ill Boy Gets to Meet His Hero: Luke Skywalker

December 18, 2017

Now that the latest “Star Wars” movie has been released, fans around the world are dusting off their lightsabers to head to “The Last Jedi.” Mark Hamill is finally showing back up in the series.

But since he starred in “Star Wars” he has never forgotten that part. In fact, a radio show host recently shared a story of Mark Hamill proving that he belongs on the light side of the Force.

A host on a Catholic radio show in Los Angeles recently shared a story of the kind act that Hamill did for his terminally ill son. Joe Sikorra’s son John was diagnosed with Batten disease when he was only seven.

Batten disease is a progressive, fatal disorder of the nervous system. It begins with blurry vision and seizures and can progress to blindness and personality changes. The disease will continue to progress and children diagnosed with it often die young.

While a treatment for Batten disease is a possibility in the future, the Sikorra’s knew that it would not exist within John’s lifetime. John’s parents just wanted to “live in the moment and to live joyfully.”

Joe shared, “We made a choice to maximize life and do what we could to take pleasure in small things. Because we opened ourselves up, rather than giving into despair and depression—though we definitely went through depressed times—we have had some amazing moments all throughout our journey.”

When John was a young teenager, he wanted to meet Luke Skywalker. He had already lost his vision but had watched “Star Wars” countless times while he still had it.

Sikorra had one connection in Hollywood—the screenwriter Ed Soloman. He asked Solomon if he could help him try to reach Mark Hamill, the actor behind Luke Skywalker. Solomon reached out to his agent, who agreed to call Hamill.


Hamill quickly agreed to meet with John and his father. The three spent hours talking about “Star Wars” and Luke Skywalker. According to Joe, “At that point, John couldn’t distinguish between the actor and the character. Mark answered all of John’s questions about Princess Leia and spaceships, and he was just very, very kind.”

When this story came out, Hamill tweeted about the experience. He shared, “There’s no sweeter sound than a child laughing—I’ve been so lucky.”


John died several years later at 24-years-old. Now, John’s younger brother Ben is 23 and is also struggling with the disease. Joe Sikorra wrote a book chronicling their experience with the disease, called “Defying Gravity”. All of the proceeds from the book are going to the Beyond Batten Disease Foundation. It will be released in 2018.

In other news, this 2-year-old boy got to sit on Santa's lap for the last time this year. Read the story here

Next: 2-Year-Old Boy Sits on Santa's Lap One Last TimeDec 13, 2017