Emilia Turner is traveling in style. The 7-year-old has a spacious bedroom in the 43-foot fifth wheel camper that her family now calls home. Since last August, Emilia and her family (mom Sarah, dad Robbie, and dog Charley) have been traveling across the country in the RV, taking to the road to raise awareness of a little-known genetic disorder called neurofibromatosis, which Emilia was diagnosed with when she was just an infant. At press time, the journey had taken the Turners to 13 states and 7 national parks and taught each of them a few life lessons along the way.
“It’s been a lesson in flexibility and change,” says Sarah. “We are pivot professionals now.” She is referring not only to life on the road, but also to the uncertain nature of Emilia’s diagnosis. Neurofibromatosis affects the nervous system, causing the growth of tumors (called neurofibromas), among other symptoms. Emilia’s medical team has been actively monitoring a brain tumor on her optic nerve that was discovered when she was 5 years old. The tumor, combined with some life-changing moments in Robbie and Sarah’s lives, was the catalyst for the family’s decision to embark on their journey.
South Florida natives Sarah and Robbie (Sarah grew up in West Palm Beach, Robbie in Palm City) met at a party in 2011 and married four years later, welcoming baby Emilia in 2018. The family settled in Jupiter, where Robbie works as a program manager at Florida Turbine Technologies and Sarah worked in human resources at Philips Electronics before moving to the nonprofit world in 2009 and then becoming a health and wellness coach. It was a happy life for the small family—and then they received the shocking news about Emilia’s health. She was diagnosed with neurofibromatosis (NF) at 9 months old.
Wanting to understand her daughter’s illness, Sarah focused on learning everything she could about NF. “I went into research mode and was constantly looking at studies,” she recalls. “I remember we all went on a walk a week after Emilia was diagnosed. It’s the only thing you can do.”
In the years following Emilia’s diagnosis, the Turners monitored their daughter by observing her progress and visiting her physician team regularly. “She was just the smartest kid, babbling and talking,” says Sarah. “A lot of families [of children with NF] see learning disabilities, and we weren’t seeing that, so you hold on to the couple little pieces of hope as you get past every milestone.”
Two thousand twenty-one was a pivotal year for the Turner family. While Emilia was undergoing chemotherapy to treat her brain tumor, Sarah’s father was diagnosed with stage 4 lung cancer. He succumbed to the disease within weeks, leaving Sarah to step in and help with her family’s insurance business. Then, on Thanksgiving weekend that same year, Robbie was in a serious head-on collision. “I was hit by a drunk driver, and I broke my spine and my hip,” he says. “It was just chaos that year.”
The Turners decided it was time to make a change. “With all the health scares and near-death experiences, we were kind of feeling like, ‘Hey, let’s live life while we have the opportunity,’” says Robbie. They had already sold their Jupiter home during the pandemic, and Robbie got the approval from his company to work remotely. They bought a 43-foot fifth wheel camper (and a Dodge Ram 3500 to pull it) and mapped out a route
that would take them across the country over the course of the next two to three years. “Our plan was to go through every state and every national park,” says Robbie.
But their adventure was about more than “living life” and having fun. Robbie, who was an avid runner and cyclist before the car accident, had the idea to use the trip to get back in shape while spreading awareness about NF and raising funds for research efforts focused on finding a cure. He pinpointed races along the family’s route that he could participate in, which totaled 12 and counting at press time in March. “One of the races was a marathon in San Antonio,” he says. “That was my first marathon since the car accident.” The San Antonio marathon was a fundraising effort for the Children’s Tumor Foundation, a nonprofit organization dedicated to driving research, expanding knowledge, and advancing care for the NF community.
NF affects about 1 in 2,000 worldwide, and right now, there are no preventative measures and no cure. While NF itself isn’t fatal, it can lead to complications such as tumors and certain cancers that can be fatal. NF diagnoses are split into three categories: NF1, NF2, and SWN (schwannomatosis). Emilia has NF1, the most common type. The condition manifests differently in each person affected, with symptoms ranging from hearing loss and bone deformities to neurological problems and café au lait spots or freckles on the skin.
It’s impossible to know what symptoms someone might experience—and that is perhaps one of the biggest challenges of living with the disorder. “The hardest thing about this is the unknown,” says Sarah. “There is a laundry list of possibilities, one worse than the next. You just don’t know, and it makes you feel very helpless.”
Emilia has some hypermobility issues, which occasionally affect her coordination, and some issues with her endocrine system too. She also has café au lait spots, skin freckling, and Lisch nodules (eye bumps). “Over half of all kids [with NF] have some other neurological difference like autism or ADHD,” says Sarah. “So, we are actually very lucky.” Emilia shows very few signs of either of these conditions.
Sarah has become an advocate for NF awareness and a source of help and support for other families struggling with a new diagnosis. “I am on the Volunteer Leadership Committee and the Patient Engagement Board for the Children’s Tumor Foundation,” she says. “A lot of what we do is just talking to people at campsites and telling people what we are doing.” Her wardrobe these days consists largely of shirts emblazoned with the Children’s Tumor Foundation logo and mission. “Just to provide insight and connect families to resources and help during the unknown is so important because as a parent, you feel really helpless,” she says.
Since last August, the Turners’ journey has taken them through Ohio, Virginia, West Virginia, Texas, and Florida, among other states, and they have visited beautiful parks and other sites along the way—including New River Gorge National Park in West Virginia, Harry Potter: A Forbidden Forest Experience in Texas, and Hilton Head, South Carolina, where they went on a dolphin sightseeing cruise. Asked what her favorite stop has been thus far, Emilia takes a minute to decide before declaring: “I think I like the Smoky Mountains the best or the cave,” speaking of Mammoth Cave National Park in Tennessee. Sarah counts Hot Springs National Park in Arkansas as a highlight. “Robbie and I both did the Hot Springs historic spa,” she says. Robbie describes the unique experience: “You go in a steam box and your head sticks out of this metal box.” The three Turners laugh at the fun memory.
In February, the family arrived in Chicago for Emilia’s six-month checkup at Lurie Children’s Hospital. Unfortunately, doctors there found that her brain tumor had shown some changes that might be concerning, and Emilia will now have to be checked more regularly, every three months. Since the family’s travels often take them to rural areas far from major medical centers, that means the future of their road trip—much like Emilia’s condition—is uncertain.
“We’ll see after the next scan, but I think we’re back in Florida for now,” says Sarah. “The adventure never changes. We’ve had detailed plans with campsites and races, and we’ve had to scrap them and start over. What’s one more time? I feel incredibly privileged and so lucky that we are even able to do this.”
Learn more about NF at ctf.org; follow the Turner family’s adventures on Facebook and Instagram.
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