By Demi Taveras
Talia Joy Castellano struck a chord in our hearts when she appeared on The Ellen DeGeneres Show in 2012. Talia quoted the little blue fish Dory when asked how she stayed positive: "Just keep swimming, just keep swimming." Many years later, after her passing, Talia Joy is still being honored by Talia's Legacy Children's Cancer Foundation, as well as many other boys and girls who have passed from childhood cancer.
September is National Childhood Cancer Awareness Month, symbolized by the color gold; to honor those boys and girls, the foundation has partnered with local nonprofit organizations to work together to promote awareness for kids with childhood cancer in Central Florida, with events like the Beacon at Lake Nona Going Gold. Nonahood News got the opportunity to have an enlightening phone conversation with Jennifer Gillan, the program director and event coordinator for Talia's Legacy, to learn more about how lighting the Beacon gold came to be.
Gillan, who is a retired pediatric oncology nurse, had Talia as a patient, and after Talia's passing, she and the foundation, including Talia's mother Desiree and sister Mattia, reached out to Mayor Buddy Dyer, who agreed to turn Lake Eola's fountain gold in honor of her passing and to create awareness. Thus, a tradition of "going gold" to spread awareness began-- the Orlando Eye goes gold and our very own Beacon located in the Lake Nona Town Center will be going gold again this year on Sept. 29.
This tradition first carried into Lake Nona after Trevor Scheerer, a young boy diagnosed with Alveolar Rhabdomyosarcoma, had passed in 2016. Gillan stated that she envisioned the Beacon to be beautifully lit up in gold. Once the artist behind the Beacon approved the lighting, the Beacon went gold in 2016 for Trevor and others who have lost their battles.
In 2017, the foundation had the idea to take all of the children's names on the In Loving Memory Candle that raises money for pediatric cancer research and place those names on the Beacon.
Each year, hundreds of names are added. Gillan said, "This tribute is reserved for children who have passed away," for those children who are "forever loved and forever missed," and for the parents who "never thought their children would be remembered." The Beacon Lighting event will also include live music, performances from local children and Encore Dance Studio, and a ride in a Lamborghini for four children (two survivors and two siblings of children that have passed) by Dream Cars 4 Kids.
Gillan expressed, "The whole point is giving children a voice. The Beacon is a symbol of hope for the one wish-- to find a cure for cancer." The Beacon Lighting brings everyone in the community together for this positive, empowering and family-oriented event to spread awareness. The more advocates that kids with childhood cancer get, the quicker it will be to find a cure for them.
"I saw firsthand the access to care that kids versus adults got," Gillan said explaining the better scheduling adults get for things like placement of surgeries and the outdated treatments children receive. Gillan highlighted the major point within the movement for childhood cancer awareness. "If you create the awareness, then the funding and legislation will follow... if we just allocate the resources, we can create change."
Talia's Legacy has reached more than 26,000 people with events like Talia Joy's Pet Walk and GLAM WARS. They work on a national and local scale to get kids access to the care they need.
"Forty-six kids are diagnosed every single day," Gillan said, a statistic that hasn't changed for decades. "Seven children die every single day."
While it can be painful topic to discuss, it's important to speak up about it. And through their efforts, Talia's Legacy has brought parents who have lost children to childhood cancer back into a supportive community. Several are coming to the Beacon Lighting from all over Florida, across the nation, and some around the world. So make sure you come out to support and honor these children at the Beacon Lighting on Sept. 29. And like Gillan told us, "BFF-- Bring Five Friends!"