I have always dreamed of traveling the world. There is so much I would love to see and do across the globe: experience the culture of one country, and taste the cuisine of another one. From a young age, I have wanted to see what nature has to offer on every continent.
When I was diagnosed with Friedreich ataxia (FA) at age 11, it never crossed my mind that a dream like traveling might be unattainable in the future. There has been a lot of disappointment in my life due to FA, but there are things that I still cling to along the way. Traveling is one of them. FA doesn’t currently have a cure, but there is a promising treatment on the way. Until then, I’m still hoping to live out my dream as best as I can.
Right before I turned 18, I was lucky enough to receive a Make-A-Wish, which meant that I could choose to do almost anything, like go to a concert and meet the artist(s) backstage, or jump out of a plane if I was feeling bold. But it was a no-brainer for me; I wanted to travel. The progression of my FA was making my physical day-to-day activities more challenging, and I didn’t know what was in store for me a few years down the road. I took advantage of the opportunity before me.
When Make-A-Wish asked what destination I had in mind, my answer came almost immediately: Italy. Months passed as my family and I got our passports and travel plans in order. It wasn’t easy planning an international trip, especially when you throw FA into the mix. Accommodations for the wheelchair were needed from the moment the car came to my house to take us to the airport.
Read more about HCP resources for FA
Rome, Italy, is almost 3,000 years old. Needless to say, it’s not inherently a very wheelchair-friendly city. I had only thought about actually getting to see the beauty of Rome one day. I didn’t think about living in it, even for a week. It took a couple of days for me to figure things out, including the cobblestone streets, the tiny hotel room, the lack of accessible storefronts, and even the restaurants packed with people. Navigating a public space is difficult when you rely on a wheelchair. I needed to plan my every move quickly and efficiently.
In 2016, when I visited Rome, my FA wasn’t progressing as quickly as it is in 2023. Still, I try to push past it and travel as much as I can even though things are hard and planning trips isn’t an easy feat. Since my trip to Italy, I’ve traveled quite a bit. I’ve been on two cruises, gone to Disney World, flown to Illinois and Nashville, and I’ve even taken some shorter weekend road trips out of state.
I’m going on a cruise again very soon and could not be more excited. The cruise stops at 4 different ports along the way, and as awesome as it will be, it’s also extremely nerve-wracking for me. I’ve been planning this vacation for months to make sure everything goes smoothly.
Most people plan their vacations in advance, so why is it any different for me? Well, FA requires extra planning when I travel anywhere. I can’t just purchase tickets at the last minute for a show or hop in a cab if I’m running late to an event. FA usually means you’re in a wheelchair, so I need to snag tickets in the accessible section way in advance. I also need to make sure the car I’m taking can accommodate my wheelchair (or my scooter). It means I need to request assistance to board a plane and book the accessible room with grab bars and a roll-in shower.
Read more about therapies for FA
Planning any trip is a process, and planning my cruise has been no different. The ship embarks in mid-May but I booked the trip back in November. Ever since then, I’ve been chatting with agents on the cruise line website and making the necessary calls to secure any accessible reservations that I need. I’m not a fan of flying with my mobility scooter because if something happens along the way, I’ll really be in a pickle. Therefore, if I can rent a scooter at my destination, that’s what I do. Lucky for me, I’m able to pick up the rental scooter at the cruise port in Miami, which I can take on board and use for all my adventures on and off the ship that week. It took a few phone calls to get all the details I needed for the scooter rental, but I was able to rent it as a result of planning ahead.
Shore excursions aren’t a spur-of-the-moment ordeal either. I have to book things in advance to make sure they are accessible for my scooter. If I want to do something on one of the nearby beaches but the shuttle doesn’t have a lift, I have to check that out beforehand and secure accommodations elsewhere.
FA has limited me in more ways than I can count over the years. Although it’s limited my physicality, I still strive to travel while I can. There is no question that preparing for a trip as a disabled individual is frustrating and overwhelming. I always say wherever I go that nature isn’t accessible. I have to be careful where I go, how I get there, and what I need to do in advance. Research is the key to planning and Google is my best friend.
