In this heartwarming and inspiring interview, we have the pleasure of talking with Sarah and Robbie Turner, a family on a mission to raise awareness for NF while embracing the adventure of a lifetime. Their journey began with the diagnosis of their daughter, Emilia, who was diagnosed with NF1 before her first birthday. Since then, the Turners have navigated the challenges of managing Emilia’s health, including undergoing chemotherapy for an optic pathway glioma.
Determined to make the most of life and bring attention to NF, the Turners decided to embark on a cross-country adventure in their fifth-wheel RV. They aim to visit all 48 lower states and as many national parks as possible, while Robbie challenges himself to complete an endurance event in every state they visit. In this conversation, we delve into Emilia’s journey, the family’s motivations for this unique road trip, and the logistics of living on the road while maintaining a strong sense of purpose and passion.
Tell us about Emilia – what was her journey to an NF diagnosis? What are her likes and interests?
Emilia is a sweet and spunky 6-year-old. She is currently very into the Decedents Rise of Red movie, crafting/art making, and a committed Swiftie, with deep knowledge of all of Taylor Swift’s songs, not just the hits! Emilia continues to say she wants to be a baker when she grows up… an idea that was planted during her first trip to chemo when someone gifted her a Play Doh cookie set.
Emilia was diagnosed with NF1 before her first birthday. It started at her 4-month appointment when her very astute pediatrician noticed her cafe au lait spots. Many additional appointments followed with a lot of ‘maybes’ until we were given the opportunity to do genetic testing. So, at about 9 months old, we got the results that she had a new mutation that was consistent with NF1.
The moment we knew Emilia had NF1, we got involved with CTF, attending our first Shine a Light Walk in 2018. Since then, we have remained fierce advocates and fundraisers, staying involved in the VLC and Patient Engage teams.
There were no other symptoms for the first few years of Emilia’s life, but we continued to follow up with her specialists. Her neurologist, who had done a fellowship in genetics at UAB and was very knowledgeable about NF, suggested an MRI to get a baseline in case there were any signs of optic glioma. This was the fall of 2020, when the hospitals were just allowing non-emergency procedures again. Emilia was a trooper with her first MRI, always has been a “great patient” at any doctor’s appointment.
Unfortunately, the news we got was not great, Emilia had an optic pathway glioma that wrapped around both optic nerves (right more than left) traveled into the chasm, and infiltrated the hypothalamus. We got three different opinions from the tumor boards at UF and UM, and from an NF Clinic in Orlando. We made the decision to treat and began chemo in November of 2020. She saw amazing results and was incredibly lucky to not have many of the terrible side effects of chemo like losing her hair or needing transfusions, even though she was allergic to one of the drugs and had to change her protocol to overnight stays with a desensitization protocol that added many years to her parents’ lives. But here we are, two years and seven months after her last treatment, completely stable!
What inspired your family to hit the road and raise awareness for NF?
Life is unpredictable, and we are well versed in the unpredictability and fragility of our lives. Not only has Emilia’s diagnosis shown us this, but I (Sarah) had open heart surgery and now three pacemakers since I was 19. Thanksgiving weekend 2021, Robbie was hit head on by a drunk driver. As a family, we have all faced down some really scary stuff and lived to tell the tale. We want to be able to live and tell even more of our story together.
Robbie and I have been talking about seeing all the national parks since before we were married, and with all that we have been through with Emilia, on top of the economy and daily grind of “typical” life, we often wondered if we would ever do it. I am not sure where the idea really began, but I started to daydream about traveling and decided to bring it up to Robbie over lunch one day.
Now, I should probably tell you that I have a lot of wild ideas, but *thankfully, my husband is the more practical one and usually will indulge me but brings me back down from outer space. This time however, he had an enthusiastic YES, and it was over from there. A plan was set in motion – the fact that we have a strong sense of purpose to go along with this adventure is key. We want to get a large decal for the RV and plan to order materials from CTF so that we can have them with us if anyone asks. Also, since we have a pretty small space for clothes, we will pretty much be living in our NF shirts!
Tell us about how you planned the route and why Robbie’s goal is to complete an endurance event in every state you visit?
This was a labor of love and took an enormous amount of logistical work. We have it planned in detail through January of 2026, and tentatively planned through Fall of 2026 when we should be completing the 48 lower states plus all the National Parks. We would LOVE to get to Hawaii and Alaska, but realize that to go to all of their national parks is a longer-term dream. We are considering a cruise or even the possibility of extending our travels to make Alaska a road trip! As far as the races go, thankfully most states have a race of some sort nearly every weekend – but finding something close to where we are planning to stay has been a challenge. We had some bigger races planned – which informed some of our route – but otherwise, we just tried to find any type of 5K, 10K, Half or Full Marathon near each of our stays. It was a lot of work! We used Google Maps, physical maps, a National Park guide, weather almanacs, Road Trippers (great app) and a few different memberships that help bring down the cost of our stays: Thousand Trails and Good Sam.
How do you (plan to) manage the logistical and day-to-day challenges of being on the road for two years? In particular, Emilia’s medical needs?
Wing it? Haha, planning the route was half the battle, we have our set stops and we have an idea of back up plans for each place we go. Emilia now goes to clinic at Lurie C
hildren’s in Chicago and every six months will go for all of her checkups, tests, and scans. I plan to do any scans I need at local imaging centers and telemedicine with my cardiologist back home. As far as day to day goes, first priority is school and work, and we have made sacrifices and tradeoffs so that we can spend less time with work and more time with each other – including site seeing and exploring each stop. We are also prioritizing National Parks, meaning we may miss some cool stops along the way that we wish we had time for.
One important thing we have done is sat Emilia down (and then reminded her a few times) that if at any time she is miserable or so homesick it hurts, we would talk about ending our trip or finding more ways to make sure she feels grounded. She is so excited for this adventure – she tells everyone – but as a 6 year old, we know this is not something she can really grasp. We want to make sure we continue to prioritize her wellbeing – and ours too.
What are you looking forward to most?
The national park and the different climates/seasons. In Florida, we have 1.5 seasons, hot and less hot. When we asked Emilia this question she said “everything!”
As you’ve researched and organized this adventure, has anything surprised you?
How well it is coming together. I would not say “easy” by any means, but it has flowed consistently in the right direction. Even with the stress and work we have to put in to make this happen, it has continued to feel like the right thing for our family.
Is there anything else you want to add?
Someone I have followed for a long time, Marie Forleo, says that ‘Everything is Figureoutable,’ and this trip is proving that to me in such a big way. If you’re willing to make the tradeoffs, concessions, and put in the work, you can figure out how to do almost anything. Sure, it may not always look exactly like you envisioned, but what ever really does? You’ve got to pivot and continue to work towards your dreams.
How can we follow along?
We are on Facebook and Instagram, and will have a website later this fall along with a Youtube channel where Emilia would like to give her reviews of each state as well as how to make a slime based on each state we visit. Our handle across all platforms is @ourbigNFadventure!
