Hi there! I would like to introduce myself, my name is Desiree, I am a wife, mother of two girls, Adelaide 15 and Daphne 8, Founder of Daphne’s Lamp, Co-Founder of CureARS, UMDF Advocate and Contracts Manager.
I was thrown into the rare disease world over 7 years ago when Daphne was diagnosed with an ultra rare mitochondrial disease, Leukoencephalopathy with Thalamus and Brainstem Involvement with High Lactate (LTBL) from a mutated EARS2 gene. She was one of 18 in the world at the time of diagnosis. It took 6 months to get her diagnosis and during that time Daphne had a neurological regression which left her unable to rollover, use her arms and left her hands clinched in fists. She experienced this regression after a trip. Once we learned more about her diagnosis we learned traveling could be a trigger for regressions, just like illness could be.
We lived on the opposite side of the country from our family and made the decision to not travel with Daphne for the fear of another regression. Our families and friends traveled to see us for years until we felt we were ready to try again, until Daphne was strong enough.
We got a dog, Kona, that we trained to service her for anxiety and mobility. She was almost 4years old and could not walk. She loved Kona, and we felt it was a good distraction if she started to “freak out” on the plane or in a hotel room that wasn’t her house. We took our first flight to Salt Lake City, Utah, a safe destination because we easily could have rented a car and driven home if anything had happened, as it was only about a 10 hour drive. This was our first trip after a three hiatus and Daphne started walking and everything went just fine.
I was always trying to have many plan Bs in case something went wrong. I had taken the dog on a trial cross country flight without Daphne to help eliminate my stress of the unknowns of traveling with a service animal. Every airline and every TSA agent is different in the treatment of a service dog. I experienced so many situations that infuriated me, they weighed the dog on the luggage scale (not supposed to happen), they had me remove her collars, leash, service vest and stay on one side of the metal detectors and then call her through (also not supposed to happen), had me go to the end of the line because we forgot to dump the water from her sippy cup and instead of rescanning it I had to go to the back of the line while my family was already through security (not ok) and then others with lovely airline employees that empowered me to advocate for what was right and not let others walk all over me.
We have successfully been traveling for more than 4 years now and I no longer have anxiety about the what-ifs. We have learned so much over the years that have made our travel days very easy. We fly across the country several times per year domestically and internationally, all while carrying over 12 liquid medications.
Here is how I make myself successful:
I have a travel/flight items note on my phone that I use as a reoccurring checklist to prepare. Daphne can walk, but she is very slow, can easily fall and fatigues quickly. I order wheelchair assistance on my tickets and that allows us to get escorted through security and dropped right at the gate and allows her to load with other wheelchairs, I do not have to hassle with her stroller this way. I do not rely on the airport to have anything that are must haves for Daphne. She has to drink at least 20oz of Cool Blue Gatorade to stay hydrated, or she will decompensate quickly, and yes it has to be cool blue flavor or she won’t drink it. I now bring a full bottle through security. If its medically necessary they have to let it through. Now I don’t have to stress about running down 6 gates at John Wayne to the one vendor that sells it before my flight.
I bring a full carry-on with hot food in a thermos, plenty of snacks for any unexpected delays and short connections, and an apple for her to eat to help her pop her ears during descent. All her meds are in a separate cooler bag with a fresh ice pack so I can just hand the entire bag to security for screening. I keep a small medical bag on the plane with me, stethoscope, pulse ox, epi pen, seizure rescue drugs, syringes and fever meds. I also make sure at home I have a full restock of all her meds in case something happens. Internationally I buy travel health insurance that has a large enough overage to life flight her home if needed.
Once we left her meds on the plane and they went to Mexico and back. We have an airtag on the bag for this reason. Her cocktail of meds is very expensive. I keep all medication lists, medical letters with diagnosis, emergency protocol on my phone and printed inside her med bag. Travel is possible for families with medically complex family members you just need to contact the airlines ahead of time for any special needs. TSA offers a variety of services for special needs families, try to research your connecting airports if unfamiliar, prep all that you need ahead of time and try to relax to enjoy the trip. Your family deserves to explore, enjoy!