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Cassie & Joshua Bailey
The Wild Thornbaileys are a family of six traveling in their 44 ft Highland Ridge 395BHS Open Range. After almost losing their son to undiagnosed type one diabetes they took their second chance at life, and have prioritized family and travel, adventuring around the country for the past five years with no plan of stopping!
After nearly losing our son to undiagnosed Type 1 diabetes, we realized we needed to embrace life more fully by exploring the world and creating lasting memories together as a family. However, with our family’s medical needs, traveling seemed daunting, especially given the unpredictable challenges of life on the road. We knew that turning our travel dreams into reality would require extensive research, a lot of trial and error, and unwavering determination to ensure our son had access to the medical supplies he needed while we traveled together.
The Day Our Lives Changes
In February of 2019, our world shifted. All of our son’s symptoms were seemingly attributed to being a growing boy and fighting what I thought was mono: Feeling constantly thirsty (I thought due to playing so much), and frequently having to pee and then wetting the bed (what I thought was from all the water he was drinking). Finally, on February 12th everything changed.
It was a bitterly cold and gray northern New York Tuesday. The chilling air could be felt in your bones even though the wood stove was burning in the basement. Josiah, my second-born and only son, slowly made his way down the stairs that morning. He was five years old.
“Something is wrong inside my body,” he said with his squeaky, tired little voice. “What do you mean, bud?” I was sitting in front of our space heater to feel the blanket's warmth on that extra cold day.
“I mean when I sleep, my body is ok. But when I wake up, something is wrong inside my body,” he said.
“Ok bud, maybe you're getting sick. Lay down and rest, I'll get you some water and breakfast.”
He slumped in front of the space heater next to me, wrapped in his Spiderman blanket. He was in and out of sleep all day in front of that space heater, only to wake when I'd check on him and make him sip or nibble anything of substance. I remember thinking, “MONO! That's it! This must be mono.” My husband Josh was sick with mono before we had kids and it made him lethargic, too. I was certain that's what my son must be struggling to fight off.
That night came, Josh was home late from work and said, “Hey bud, why don't you go upstairs brush your teeth, and get into bed I'll be right up.” His frail little body scuffed over to the bottom of the stairs where he collapsed.
“I can't daddy, can you carry me?” he whispered. Even his vocal cords were too tired to work right. The stairs looked like a daunting mountain that he couldn’t climb.
The Diagnosis
We didn’t want to wait until morning, so we rushed him right to the hospital. “Your son has Type 1 diabetes and is in DKA, had you not brought him in tonight he may not have woken up the next morning,” said the doctor.
A few days into the hospital stay we discovered he also has celiac disease (along with myself and one of his sisters). Both Type 1 diabetes and celiac are autoimmune diseases. Type 1 caused his pancreas to no longer produce insulin causing sugar to build up in his bloodstream getting thicker and thicker, eventually stopping it from flowing altogether. Celiac disease is an autoimmune disorder against gluten, meaning he is unable to eat or even touch it without his body attacking the digestive organs.
After such a traumatic health scare, we realized how precious life is and how important it is to live it to the fullest. That’s when we decided we wanted to travel as a family as much as possible. The only way to do so easily was by RV. We needed to be able to take everything with us, including the kitchen sink. In our RV, we can cook all our gluten-free meals from scratch, eliminating any worry of cross-contamination.
Traveling across the country in our RV has given us so much freedom—something I never imagined I could have after his diagnosis. So if your family has similar health or medical needs, here are some of our family’s tips to help you navigate them while on the road.
Picking a Pharmacy
It’s important to pick a pharmacy with locations throughout the country because you never know when you’ll need an emergency refill. We chose Walmart Pharmacy because there’s always a Walmart within at least 30 minutes of where we are. When we call for insulin refills, we let them know we’re on vacation and ask for the prescription to be sent to the closest Walmart in our area.
When dealing with an insurance company, you must request an insurance override so your prescriptions are covered in another state. It can be a simple process but sometimes they require the doctor to send over documentation to approve the override.
Scheduling Doctor’s Appointments
We have a great relationship with Josiah's endocrinologist who knows how much we travel. Our son has two appointments a year, one in-person and one virtually. We plan our route accordingly to visit his doctor for the in-person visit.
In most cases, you can also use telemedicine for nonemergency appointments, like antibiotic prescriptions. However, it’s important to know where the closest hospitals are. We look up the locations at every new place we visit in case there is an emergency and we need to take him in immediately.
Obtaining Medical Supplies
Josiah uses an insulin pump and a CGM to monitor his blood sugar levels. Those supplies get shipped to our mail forwarding address because they must be shipped in the state in which our address and insurance are located. The mail forwarding service then ships the box to our campground. We stock up on supplies before hitting the road, just in case of an emergency—like the supplies not making it in time or being sent to the wrong location.
All his supplies are stored in a cabinet, organized into sections between his insulin pumps, Dexcom CGMs, transmitters, blood glucose testers, and needles. However, his insulin must stay cold and is kept in the RV’s refrigerator door.
Alternative Health Insurance Options
This was the trickier situation for us to figure out. Josiah is on a children's health program offered by the state for kids with life-threatening diseases. This program is not income-based and was referred to us through his pediatric endocrinologist.
There is also a company called RVer Insurance Exchange that helps you get health insurance while RVing for extended periods. Many RVers use telemedicine for basic needs and pay out of pocket if an emergency room visit is needed. Some RVers also use something called a health share program, usually based around a ministry in which you pay a premium as opposed to the insurance company. Your payment goes towards helping pay for others' medical bills and when you have a medical bill that comes up, their payments go towards helping pay for your bill.
And then lastly, your career may also offer health insurance for your family.
