Six-year-old Jaxson Butkus brought joy into the lives of everyone he met during his short life, and now, a venue named in his memory will continue to spread happiness and spark the imagination of wish children and their families from around the world. In honor of Jaxson, the new Merlin’s Magic Space at Give Kids the World Village has been renamed “Jersey Jaxson’s Playroom,” a nod to his home state of New Jersey and love for Lego.
The announcement was made during a special dedication ceremony attended by more than 40 of Jaxson’s family members as well as representatives from the Legoland Florida Resort and the Merlin’s Magic Wand Foundation, who collaborated to bring the uniquely themed, ADA-accessible Legoland play space to Give Kids the World.
“Jaxson captured our hearts and we are truly grateful for the generosity of Merlin’s Magic Wand Foundation and Legoland for helping us honor his memory,” said Give Kids the World President and CEO Pamela Landwirth. “Jersey Jaxson’s Playroom will bring joy to countless children for many years to come.”
In 2015, shortly after his first birthday, Jaxson was diagnosed with atypical teratoid rhabdoid tumor, a rare, fast-growing cancerous brain tumor. He endured brain surgery, extensive chemotherapy and focal radiation. By August 2019, he appeared to be doing well, and looked forward to starting kindergarten. A few months later, however, the tumor returned, leading to surgery, high-dose chemo, radiation and three rounds of stem cell transplant. In October 2020, Jaxson walked into the hospital for his final stem cell transplant. A few days later, he stopped walking; the tumor had spread to his spinal cord. Due to swelling caused by the radiation, chemotherapy was no longer possible.
In February 2021, Jaxson and his family were welcomed to Give Kids the World Village on a rush wish with the support of the New Jersey-based Elle Foundation, a nonprofit dedicated to granting final wishes for children battling a recurrence of cancer. Jaxson and his family enjoyed a memorable week visiting local theme parks and exploring the Village. Even a mid-stay blood transfusion could not erase the infectious smile and loving spirit of the courageous young Lego fan. While Jaxson received treatment, his brothers Dominick and Joey volunteered their time brightening the lives of other wish families by scooping ice cream in the Village’s ice cream parlor, Henri’s Starlite Scoops.
By week’s end, Jaxson was hospitalized for the last time. He passed away on Feb. 28, 2021, surrounded by his large extended family, who traveled to Central Florida from across the country to spend his final hours with him. The family returned to the Village this week to celebrate Jaxson’s life and dedicate Give Kids the World’s Lego play space in his honor. In a tribute to Jaxson’s love for wearing beanies, custom beanies were donated to all attendees by Love Your Melon, a nonprofit that provides hats to children battling cancer and raises funds for pediatric cancer research.
“We are grateful for the magical time we spent together at Give Kids the World Village,” said Diana Butkus, Jaxson’s mother. “Thanks to the Village and the Elle Foundation, we created priceless memories as a family and took comfort knowing that Jaxson’s last days were filled with joy, laughter and love. The way the Give Kids the World staff took my older boys under their wings and helped them cope during this very difficult time made an indelible impression on them; I have no words for how much that meant to all of us.”