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Planes, Trains, & Accessible Travel With SMA

Planes, Trains, & Accessible Travel With SMA

Talk to your doctor to determine if you or your child is fit to travel.

Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

First tip: Pack as much as you can in your suitcase. I have often had the fees waived for being over the weight limit because of things like power chair chargers. The words “medical necessity” go a long way.

Have your child prepared for what is going to happen when you go through security. Explain to them the procedures and go over what will be done. I try to get through as fast as possible because they pull Leah off to the side to scan her chair and pat her down. She knows to listen to the security people and to cooperate with them. She also knows to keep her eyes on me and to stay put. The less carry-on luggage you have, the easier and faster all this will be.

Leah drives her chair all the way to the gate. The gate agents have always let us preboard and have always been very helpful. Surrendering the chair is always the hardest. I always explain how to put the chair in manual mode and I take off anything that may get lost (harness, backpack, etc). I know some parents wrap the chair in bubble wrap or put a note on the chair with instructions, but I never have. Taking a before/after picture of the chair is also helpful, just in case. Once you land, look over the chair and make sure it’s functioning. In all the times we have flown, Leah’s chair has only been broken once (knock on wood). It was a nonessential piece of plastic that was broken. Insurance covered the repair and we were given two free round-trip tickets from the airline before we even left the airport.

Flying is not the only mode of transportation. We have taken the train from Milwaukee to Chicago, and that is so much fun. We also love family road trips. When we are planning a trip, we check the local attractions for accessibility. Sometimes that works, sometimes it does not. Kudos to my nephew’s fiancé who took the cousins to the caverns in Virginia and carried my daughter up and down flights of stairs (I think 175 steps was the grand total) so she could go on the “accessible” tour.

One of the most important things is to find another family or SMA friendly hospital where you are traveling to. If you have an equipment malfunction, knowing another SMA family is nearby can be a great help. They may have the supplies you need or the number you need for repairs.

My biggest tip is: do not be afraid to travel. I have always found people are more than happy to lend a helping hand. Planning ahead and planning for different scenarios is essential. Leah has decided she wants to go on a cruise. She has started planning it and is looking into accessibility for different ports. It’s a great learning experience for her, and educational. Your next adventure awaits. Go for it and have fun!

Read more articles from Kate and other Care Column contributors at >

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The preceding article is content provided by our sponsor Biogen. The views and opinions expressed in the content above are not the views and opinions of SMA News Today or its parent company, BioNews Services, LLC.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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One comment

  1. Angel says:

    Cruises are fantastic! If you are like me and my family when we travel there is quite a bit of luggage that accompanies us (much of it very medically necessary and some from over packing). When you move from hotel to hotel to tour an area or country it means unpacking it all all the luggage at every stop and then repacking it into a bus or cab before moving on (rinse and repeat). However, on a cruise your luggage travels with you in your room all the way to the next port, unpacked only once! Sometimes putting all the souvenirs back into the luggage becomes interesting, but that is an everybody problem. Of course there are always unique accessibility obstacles. Often you have to splurge for a bigger room, so that the wheelchair and everything else can fit. Accessible rooms usually do not start on the cheaper lower levels. Yet sometimes they will cut you a great deal with the right travel agent or website. At the major ports (where you check in and check out) with the major cruise lines accessibility is not usually a problem. I was able to drive onto most of the ships. However, I guarantee that every port will not be accessible on virtually any cruise. With a lighter chair, usually you can get some very helpful stewards to help carry the chair and possibly you down to where you can find in many places (depending on the country) an accessible cab. A truly knowledgeable ship event coordinator will know which ports are the best for accessibility and vehicle arrangements. A very helpful event coordinator well even call ahead to make sure the cab is waiting for you. Though I have yet to find an event coordinator who actually coordinates group excursions events for optimal accessibility. However, honestly, if you cannot disembark at every port staying on the ship is not always a bad thing. Most cruise ships have quite a lot to do! I have only traveled on a cruise as a minor once (16 years old). So I am not extremely familiar with all of the kid friendly activities. When I was 16 we went to the Bahamas, the room was disgracefully small and I had to park my chair outside in the hall to charge it. Yet I had a blast! Since then cruises have only improved and offer a wide variety of entertainment on the ships. I have heard that (but never experienced) Disney cruises are specifically helpful when it comes to accessibility and children. But that is only hearsay. My grandparents have been to all 50 United States and over 40 different countries. I definitely inherited their great desire to travel and have been all over this country and the world. I am not a huge fan of the ocean from the edges (beaches), but I do love it from the middle (cruise ships)! Bon voyage on your next cruise adventure!

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