One family’s RV enables them to comfortably travel cross-country with a disabled child and leads to memorable adventures along the way.
By Pat Jennette, F505807
July 2023
RVing experiences take us on journeys that sometimes go beyond travel. For my husband, John, and me, the opportunity to help a little boy and his family find an effective way to secure medical treatment brought to light how important RVing can be, not just for recreational use, but for health reasons.
Louis Birner, now 4 years old, suffered devastating brain injuries as an infant, resulting in painful spastic quadriplegia, a form of cerebral palsy (CP); cortical visual impairment (CVI); and intractable epilepsy (seizure disorder).
His parents, Mellory and Dave Birner, assisted by their 10-year-old daughter, Melody, provide Louis with 24-hour care. Over time, it became apparent that he required additional therapies and treatments for his development, many of which were not available in the western Pennsylvania region where they live.
Dave and Louis
Louis can’t use public transportation because of the frequency and severity of seizures he experiences. Even car travel to appointments is difficult because of the need to transport cumbersome yet vital medical equipment.
In the summer of 2021, we were introduced to the Birners through a mutual friend, Chris Dilla, who was aware of their plight. She asked us whether we would help find a used, reliable RV for Louis and his family so they could travel cross-country for stem cell treatments and other therapies.
We’re no strangers to traveling with medical equipment. John has idiopathic pulmonary fibrosis (IPF), which necessitates access to oxygen equipment as we travel. We understood the importance of finding the best fit for Louis and his family.
Mellory grew up RVing with her family, so while she had knowledge of traveling by RV, she didn’t know what options would be best for the current situation.
The goal was to find a medium-sized motorhome that could remain mostly packed, ready to go, and provide adequate accommodations for the family, yet have ample space for Louis to be safe and comfortable.
Also required was storage for Louis’ medical equipment, refrigerated medications, and other items the family needed should he have a seizure on the road. Traveling by RV for medical treatments and therapies would help the Birners avoid hotels and public restrooms, keeping them exposed to as few people and germs as possible. Louis has a compromised immune system, and even the common cold could result in a life-threatening seizure.
The Birners’ motorhome enables Louis to be safe and The Birners’ motorhome enables Louis to be safe and comfortable during road trips. when they travel.
We’ve been fortunate to accumulate a lot of resources during our 10-plus years of traveling by RV, six of them as full-time RVers. So, armed with those resources, together we all further refined the family’s RV needs. We put them in touch with the nonprofit Help Hope Live, so they could set up a portal for medical fundraising. Our friend Chris suggested a GoFundMe account, which the Birners’ aunt established. Chris utilized her extensive social media skills for outreach. We created a database of our own RV resources and reached out to our connections for guidance and support.
“I knew that the task we were asked to accomplish had to be done with the utmost of care, as little Louis and his family needed to have a fully reliable vehicle for so many reasons,” John said.
The original goal was to find an RV that could be donated to the family. However, since time was of the essence, that didn’t materialize.
John and Dave communicated frequently during the search for an RV, when what looked like the right one appeared on RVTrader.com. It was a 2017 Jayco Redhawk 29XK 32-foot Type C motorhome for sale by a private owner in Kentucky. “Dave lives in Pennsylvania. We were wintering in Southern California. I flew out to meet Dave and we traveled to Kentucky. There, after using my inspection training to look over the RV thoroughly, we determined it was ‘the one,’” John said.
THE TRIP BEGINS
In March 2022, the family went on their first-ever RV journey to Arizona where Louis received a stem cell transplant using his own adipose (fat) cells at the Total Wellness Medical Center in the city of Surprise. It’s considered among the most advanced treatments for individuals with brain injuries.
The procedure was so successful that they drove cross-country again for another stem cell transplant procedure in October 2022.
The family’s most significant worry, Louis having seizures while traveling, happened during their first time on the road.
Mellory explained: “We were at a rest area in Marshall, Illinois. Louis was experiencing a prolonged seizure event. The first responders were exceptionally kind and helpful, and once the seizure completely stopped and Louis was deemed stable, we were safe to travel again.
Louis required emergency medical assistance during the family’s first RV journey.
“Fortunately, it was the only major hiccup we had going across the country and back,” she added.
Louis had more seizures, but Mellory said they handled those without the assistance of emergency medical services. One was in the RV in the parking lot just a few hundred feet from the rim of the Grand Canyon.
“Our little warrior was able to quickly recoup thanks to the equipment we had on hand,” she said. They proceeded to enjoy the rest of the day at the Grand Canyon.
Dave has told us that having the RV close by where Louis can take breaks, hydrate, and cool down, as well as take his medicines and eat his meals, has been vital to his recovery and comfort. He said that having this quiet space when Louis needs respite has been important.
We’re impressed, too, by Louis’ big sister, Melody. She’s his best friend, biggest cheerleader, and one of his greatest advocates. “Melody makes sure her little brother is included, that activities are modified for him so he can experience whatever is going on,” Mellory said. “She sees her brother as simply having additional needs and requiring more hands-on support.”
We’ve learned that since their two cross-country trips, the Birners have used the RV for smaller trips as well. They’ve learned a lot about RVing with a child who has complex medical needs, such as how to prepare for trips; outfit the RV for Louis; and use RV resources, including mapping out trips and locating where to stay so as to best fit their needs.
RVing yields many intangibles , such as allowing little Louis to enjoy the oudoors while avoiding crowds and germs.
The Birners downloaded numerous RV travel apps to help them be better prepared as they travel. They also were gifted memberships/subscriptions to RV Life and Harvest Hosts. Both have proven to be immensely helpful and are used every time they hit the road in the RV, Dave noted.
In addition, he said, “Our family has experienced boondocking, mooch docking (staying in friends’ driveways), and RV parks/campgrounds across the USA. We have spent nights in Sam’s Club and Walmart parking lots; restaurant parking lots; farms, including a super wonderful donkey farm in Oklahoma; and even an old junkyard-turned-brewery in New Mexico.”
Going forward, they need to consider the next steps for making the RV more accessible now that Louis has his first wheelchair.
Mellory said they have become confident traveling with medical equipment such as oxygen and suction machines, a toilet chair, a bath seat, and positioners. The RV also has a 1,000-watt inverter so that outlet power is available at any time, especially for Louis’ equipment.
“The RV has become a space that Louis has come to know and feel comfortable in while exploring the new and unfamiliar that is the gift of road travel,” Mellory added.
TRAVEL TIPS FOR OTHER FAMILIES
What advice do the Birners offer to other families traveling with children who have complex medical needs?
- Plan and pack efficiently; anticipate a little extra chaos along the way and extra stops.
- Don’t be afraid to reach out to medical facilities you plan to visit to ask whether they can provide parking accommodations while you are at appointments.
- Bring collapsible traffic cones. They can be helpful in parking situations.
- Longer trips can take you through areas outside the major emergency response hubs. Keep handy any written documents for special needs and medical responses in case you run into trouble. This makes for a quicker engagement with EMS.
- Make a list of the equipment you typically have for your family member. Then narrow it down to those things that are most essential for the trip you are planning. Downsize or modify items for life in the RV, such as extra oxygen tanks.
- Choose an RV model with plenty of space for your needs, such as equipment storage or refrigerator space.
- For smaller items that are used regularly, keep duplicates in the RV ready to go to avoid the need to move things back and forth between home and RV.
- If overnight travel takes you to a dry camping or boondocking location, don’t be shy about asking for access to a 15-amp outlet somewhere nearby. Many hosts will gladly offer up power access, especially considering it is for maintaining reliability of medical equipment. Make sure you have a 15-to-30 or 15-to-50 adapter and extension cords.
- If you have a disability placard because of a family member’s condition, put it in your tow vehicle or motorhome. Even though you may not fit into all accessible parking spaces, the placard may grant you forgiveness in certain parking situations.
- Set aside time for fun and making memories with other family members, too.
APPRECIATING OTHERS
Dave and Mellory said, “We are forever grateful to Pat, John, and Chris for giving us that supportive ‘nudge’ to kick off the RV search.”
As for us, we’re grateful to the Birners for the opportunity to use our RV experiences to help their family. It warms our heart that by helping them accomplish their mission to find an answer to obtaining medical services for Louis, it opened the door for them to travel and make wonderful memories, to visit places as well as friends they likely would not have been able to see otherwise. Plus, we’ve made new RV friends!
Dave said, “Our only regret is that we had not taken the leap into RV life sooner!”
The family’s packing list will soon include new items for their part-time home on wheels: baby equipment. Mellory and Dave’s new baby daughter was expected to arrive in June.
Follow Louis’ journey with his family at www.facebook.com/ourwarriorshealingjourneylouisdavidbirner or #HelpLouisHeal.