"In the midst of struggle and tragedy, it was those connection points that made them feel loved and less isolated," says Joe Sikorra, whose son, John, succumbed to juvenile Batten's disease.
It was about eight years ago when Mark Hamill agreed to meet a child with a terminal illness who wanted nothing more than to talk to Luke Skywalker in person.
The request was a remote possibility. But Ed Solomon, the screenwriter best known for Men in Black and Bill and Ted & # 39; s Excellent Adventure, had to try it for his friend, Joe Sikorra, whose son was dying of juvenile Batten's disease (JNCL).
The actor Star Wars is known for his big heart and his donation to charities, but this particular moment went unnoticed, until Solomon tweeting began on this on Monday in an effort to combat what appeared to be a daily wave of negative news. His tweets were so well received, Twitter did a moment of them and Solomon was inundated with answers. Even Hamill saw.
Heat Vision on Tuesday met Solomon and Sikorra to learn more about their emotional "beautiful experience" with the next star Last Jedi .
"Around 1998, my son, John, was diagnosed with a genetic disorder called Juvenile Batten Disease (JNCL)," says Sikorra. "The disease steals children's vision first, followed by cognitive motor function, typically children die before the age of 20. It is a very complicated disease and most doctors are not familiar with it. the moment, we did everything we could. " His other son, Ben, also has JNCL.
John was obsessed with Star Wars and watched the original trilogy every day, says Sikorra, who was a former Santa Monica police officer and now works as a therapist and presents a call program in Relevant Radio, a Catholic network. He also wrote the book Defying Gravity on the condition of his children and the experience of the family.
Wanting to give his son a special experience, Sikorra called his friend, Solomon, hoping he would know that Hamill was somehow a job for John to meet his hero.
"I had never met Mark, but I called his agent and asked him if this could happen," says Solomon, who is currently working on the limited series directed by HBO's Steven Soderbergh, Mosaic . "Mark's agent said:" Please, do not tell the boy anything because I do not want to raise your hopes. "And then, literally, less than two minutes later, Mark called and said," I'd love it. How about tomorrow? "I started to fight."
The next day, Solomon and Sikorra, together with the two sons of Sikorra, met with Hamill during part of the day.
Due to his mental state, John could not differentiate between Hamill the person and Luke Skywalker the character. The child's short-term memory was sometimes fleeting. The actor handled it like a professional, remember Solomon and Sikorra.
"Marcos spoke with Juan in a simple and direct manner and with total dignity," says Solomon. "John would ask the same question three times in a row, and Mark would respond the same way every time."
Sikorra adds, "Mark was very patient and kind, it was one of those beautiful experiences, it's very humiliating, this disease, you have to put aside your normal expectations for yourself and your children and your family. And the tragedy, it was those connection points that made you feel loved and less isolated, Mark was very kind, do not rush, my time is your time. "
But, there's a little more of the story that involves another Star Wars icon the late Carrie Fisher.
"So, Mark says there's some final question, and John asks, 'Can I see Princess Leia?' And Joe and I looked at each other and grimaced, and I remember Joe waving His arms towards Mark, as if you did not have to do this, and Mark said: "I'll ask." Solomon remembers: "And Mark called me later that day and said:" Princess Leia would be Happy to meet John & # 39; I told him about the family. She was very excited about the injustice of things in life. And she said "I only have two questions: Where and when? & # 39; Unfortunately, John's situation began to deteriorate quite quickly after that, so we could not meet with Carrie. But Carrie had agreed to do it and that was through Mark. "
John died on September 24, 2015. He was 23.
Sikorra says that her son knowing Hamill is a day that the family will always treasure.
"It was one of those moving and moving things," he says. "And in that moment, he picked John up and made him feel good, important and loved."
Solomon said he was forced to tell the story, so the fans had some encouraging news after what seems to be a Hollywood or a political scandal after another.
"There has been so much negativity these days and every time I see one of my heroes in trend, I have to I looked through my fingers to see what a bad thing he could have done, "says Solomon, and because of Last Jedi I've been seeing Mark's face everywhere and he reminded me."
Among the multitude of people who saw the tweets was Hamill, who answered with, "There is no sound sweeter than that of a laughing child, I have been so lucky, I feel it is my duty 2 to return What I can, I much prefer visits to two hospitals than talk shows, Heartbreaking but inspiring, makes my career seem trivial in comparison. " "I wish I could do more."
Last Jedi opens on December 15. Sikorra says that he, his wife, Lori and Ben will see him for John.