The true beauty of Jack’s Christmas Light Spectacular

Jack’s first memory of Jonah, my son with epidermolysis bullosa (EB), was at Jonah’s first birthday bash in 2010. It was a party to rival all parties, complete with carnival games, a petting zoo, and a three-decker cake.

We didn’t think Jonah would make it to his first birthday, so we celebrated big. Jack and his family came all the way from Florida to celebrate with us. Although Jack had met Jonah before, this was the first time he remembers.

Jack and Jonah pose for a photo in preparation of Jack’s Christmas Light Spectacular. (Courtesy of Patrice Williams)

Jack, now 17, is our beloved cousin. He is the son of Jonah’s dad’s first cousin Tiffany. When God made Jack, he broke the mold. Jack is hilarious, smart, and precocious and has one of the biggest hearts of anyone I know.

When Jack was 11, he began putting on an incredible holiday light show. He taught himself to do it via YouTube, and for years has been hanging thousands of lights on his house, programming them to music, and creating an amazing half-hour show for his community to enjoy.

In 2021, after several years of the show, Jack realized it could become something more. He started using it to raise money for debra of America, a nonprofit that funds research and supports patients and families battling EB.

Jack was aware that his show was growing and that he now had an audience. With an audience came a platform, and he knew what he wanted to use his for. That year, Jack raised more than $8,000. The next year, in 2022, he raised more than $13,000.

Today, the show includes more than 10,000 lights synchronized to 12 songs that last just over a half-hour. In 2023, it ran every night from Thanksgiving to New Year’s Eve. And it raised more than $18,000!

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The amount of time and work Jack puts into this show is unfathomable. It takes anywhere from three to five hours to program each minute of music. And that’s just the computer part. The physical installation of the lights takes weeks. Jack starts setting up each year in early September — all to fight for a cure for his cousin.

Jack and Jonah get to spend a week together each summer at the beach, at what we call Cousin Camp. Jack really began to understand EB because of this extended time with Jonah. Jonah struggled when all the cousins went for their nightly beach walk. Because of foot blisters, it was often painful for him. While all the other kids sat around eating chicken pie or pork tenderloin, Jonah had to be fed through his tube.

Jack observed Jonah leaving the beach early — where everyone else remained for hours — to go inside to do bath and bandages. He specifically recalls one year when Jonah merely bumped into a stroller, resulting in a large, raw wound that had to be drained and bandaged. Jonah couldn’t tolerate the salty ocean water afterward, which put a damper on the entire rest of his day.

Jack says there was never any question what he’d raise the money for. Year after year, he’s seen firsthand the effects of EB on someone he loves. So he’s taken his talent, his hours of labor, and his heart, and given them to his cousin. Every year he’s made it matter.

Opening night of Jack’s Christmas Light Spectacular in 2023. This year, the show raised more than $18,000 for debra of America, a nonprofit that helps families dealing with EB. (Courtesy of Patrice Williams)

The light show is becoming well-known in Jacksonville. It’s a nightly attraction during the holiday season for lucky community members. But to us, it’s so much more. Jack’s Christmas Light Spectacular is a beautiful labor of love that one cousin has for another. And it means more than he could ever possibly know.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.