Eliora, a 12-year-old Kennesaw resident with spina bifida, recently embarked on a remarkable journey to Disney World, courtesy of Bert’s Big Adventure.
Eliora B. was one of 12 children between ages 5 and 12 with chronic and terminal illnesses selected for the annual Bert’s Big Adventure trip, a nonprofit organization sponsored by Bert Weiss and his popular Atlanta radio show “The Bert Show.”
The story of Eliora’s arrival into the world is a unique one.
During a routine ultrasound appointment, separated parents B.J. and Priscilla received unexpected news about their unborn daughter, Eliora — a concerning “lemon sign” on her skull. Determined to gather more information, they promptly arranged a second ultrasound on the same day where they received the diagnosis of spina bifida, a condition the Mayo Clinic describes as occurring when the spine and spinal cord don’t form properly.
“We explored several fetal surgery options, even traveling to a children’s hospital in Cincinnati for evaluation,” B.J. said. He has primary custody of the children.
Ultimately, Eliora was not an eligible candidate for surgery.
Upon her birth on March 6, 2012, Eliora was promptly transferred to Children’s Healthcare of Atlanta, where she underwent two significant surgeries within her first three days. The first surgery aimed to close the opening in her back, known as Myelomeningocele, while the second involved inserting a brain shunt to relieve pressure on the brain by draining excess fluid elsewhere, as explained by Beaumont Health.
Eliora faces uncertainty about her future independence due to developmental delays impacting her cognitive and motor skills, yet she recently began self-catheterizing, a vital medical procedure that involves the usage of a urinary catheter tube to drain urine from an individual’s bladder, according to MedlinePlus.
Despite her gentle demeanor, Eliora’s brothers Asher, 12, and Levi, 8, describe her as spirited and lively.
“She has an older brother and a younger brother, and she uses that to her advantage,” B.J. said about his daughter’s personality. “She knows she’s the little princess and has developed a little sass to go with it.”
At just 12 years old, Eliora endured more than 20 surgeries to date, with most of them being shunt revisions. Along with the use of her wheelchair, Eliora requires ongoing medical care and monitoring, including medication management, wound care and assistance with her bladder and bowel functions.
Finding appropriate medical facilities and healthcare professionals while traveling, especially in unfamiliar locations, can be challenging and stressful for her family, but Bert’s Big Adventure was determined to offer Eliora and her family respite from her illness.
Established by Bert Weiss, host of “The Bert Show,” Bert’s Big Adventure is a registered nonprofit dedicated to providing a transformative, all-expenses-paid, five-day journey to Walt Disney World for children grappling with chronic and terminal illnesses, along with their families, as detailed on its official website.
When Bert’s Big Adventure began in 2002, “their primary objective,” Weiss said of the nonprofit, “was to offer deserving children and their families a respite from medical appointments, hospital visits and daily challenges by granting them a getaway.”
As part of Bert’s Big Adventure collaboration, two doctors and nurses joined the children and their families to address any medical concerns.
Kaitlin Ballard, a public relations and account manager for Premier Agency, emphasized that these medical professionals also provide reassurance and support to ensure the well-being of the children and their families.
The adventure commenced early at 6 a.m. on Feb. 22, 2024, with a vibrant send-off celebration at the Hilton Atlanta Airport Hotel. Special activities, including cooking with Top Chef Kevin Gillespie and an exclusive Daddy-Daughter Date at Kidz Bop Live, set the tone for the journey. Later that morning, families boarded a chartered flight to Orlando.
At Disney’s Polynesian Village Resort, they rested before a magical dinner at Epcot’s Living Seas Salon, where Mickey and Minnie made surprise appearances. A private after-hours ride on Remy’s Ratatouille Adventure capped off the night.
Each day at Disney World was filled with activities specifically scheduled for the children including breakfast at Tomorrowland Terrace in Magic Kingdom, princess makeovers at the Bibbidi Bobbidi Boutique and adventures at Disney’s Animal Kingdom.
Eliora found a friend in Olive, 12, who has cerebral palsy and global developmental delays. The two bonded over their shared experiences as wheelchair users.
“This was purely an opportunity to revel in the simple pleasures of exploration and adventure, to savor moments of freedom and joy that might otherwise be elusive from chronically ill children,” said Amber O’Connor-Moore, a Communications and Social Media Manager for Bert’s Big Adventure.
Eliora has faced more challenges in her 12 years than many people do in a lifetime. For the young girl, whose life has been punctuated by the complexities of a chronic illness, the prospect of travel carries profound significance. It signifies liberation from the constraints of medical appointments and hospital stays, offering her a chance to venture beyond the boundaries of her everyday existence. Travel represents a gateway to new experiences, a temporary break from the routine of doctor’s visits and surgical procedures.
Bidding farewell proved to be the most challenging aspect for the families involved.
B.J. expressed how difficult it was, saying, “Goodbyes are incredibly tough. It’s like meeting your soulmate but knowing you can never see them again.”
That’s why the father of three started the “See-You-Laters”, a private Facebook page created for the families to stay connected.
Eliora keeps in touch through video calls. The charity also orchestrates quarterly reunions for the children and their families. The reunion this year will take place on April 21, 2024.
Despite her health issues, Eliora dreams of becoming a doctor, a testament to her resilience and determination. With nearly 270 children and their families served to date, Bert’s Big Adventure continues to spread joy and create unforgettable memories, one magical trip at a time.
For more from Fresh Take Georgia and the latest updates, follow us on Facebook and Twitter.
