For people with spinal muscular atrophy (SMA), long trips away from home can seem like an enormous venture. Because living with SMA requires special accommodations, you’ll need to take assistive devices and equipment on your journey. In addition, traveling with SMA means finding transportation and places to stay that are accessible and meet your or your loved one’s unique needs.

Whether there’s a child with SMA or an adult who is traveling, planning ahead increases the chances of a smooth and successful experience. So if you’re ready to hit the road, here are some tips to keep in mind.

1. Research and Plan Ahead

Research and planning are crucial for traveling, especially with a disability. “I always plan and pack for vacations as though I am doing an expedition into hostile territory on an alien planet,” said a mySMAteam member.

Accessibility

You can start by digging into your destination’s accessibility features, including wheelchair ramps, accessible restrooms, and private and public transportation options. The locations of hospitals and clinics are essential. If your child has SMA, finding a medical facility with pediatric care would help in an emergency. You may need to book hotels further in advance than usual to ensure that you get a handicap-accessible room, as these are often limited. The faster you start the ball rolling with your plans, the less stress you’ll face down the road.

Travel Safety

Babies with SMA type 1 aren’t safe in traditional infant car seats or strollers. A car bed or reclining stroller may allow for better breathing. If you need a car, rent one designed to accommodate a car bed, wheelchair, or any other necessary equipment. Be sure to discuss your plans with your or your child’s health care team to get their advice about the safest ways to travel. Request a letter from your medical team stating your accommodation needs, medications, and emergency contact numbers of your specialists.

For air travel, remember that the Transportation Security Administration (TSA) encourages travelers to contact the TSA Cares helpline 72 hours before flights to arrange for special accomodations and get important details about screening.

You should also contact the airlines you’re flying with to notify them of accommodations that you’ll need during the flight, such as clearance for oxygen concentrators.

On your travel day, always try to arrive extra early. You may need more time for things like partially disassembling power wheelchairs or inspecting equipment like bilevel positive airway pressure (BiPAP) machines.

Because you may need to spend a long period of time at the airport, you’ll want to pack activities to keep you or your child entertained and in good spirits while you wait.

Travel Health Insurance

Health insurance policies might not cover all (or any) medical expenses you encounter while traveling in other countries. Before traveling, find out what your policy covers. You may consider adding a short-term travel insurance option to your trip. Choose a policy that pays hospitals directly. If you travel frequently, longer-term travel insurance policies are available. You may also consider adding medical evacuation insurance, especially if you’re traveling to an area with limited medical resources.

2. Bring What You Need

“When we travel, it always looks like we are moving in,” said a mySMAteam member. There’s a good chance that you’ll need to pack more than most people if someone in your group has SMA. Medications, mobility aids, feeding tubes, and other supplies can be tough to fit in a carry-on bag. Consider lightweight and collapsible mobility aids for easier transportation. When packing expensive and necessary medical equipment, be sure that your luggage is locked and labeled with your contact information.

Members of mySMAteam have discussed the different items they take on trips.

“Traveling is becoming a pain,” said one member. “I have to bring a director’s chair, so I have somewhere to sit and know I can get up from, a toilet riser for the same reasons, and a walker or cane if I have to walk a distance.”

Another responded, “I know how you feel. … I just purchased a portable sit-to-stand cushion. It’s battery-operated and can be used on a wheelchair, scooter, or any chair. It comes with a backpack to carry it in. I’m looking forward to using it.”

Some airlines will waive the fees for heavy baggage if it includes equipment you need for SMA. It never hurts to ask for help covering the additional costs.

3. Communicate Your Needs

Effective communication is key to having your needs met while traveling with a disability. Before your trip, let airlines, hotels, and tour operators know about your specific situation and concerns. Many airlines offer special assistance services for passengers with disabilities, such as wheelchair assistance, help getting to the gate, and priority boarding.

When choosing where to stay, select your options carefully. Look for hotels, resorts, or rentals with accessible rooms equipped with features such as roll-in showers, grab bars, and widened doorways. Confirm there will be accessible parking, elevators, and ramps by calling or emailing the lodging. Many travel websites offer filters for searching specifically for accessible accommodations, making it easier to find the best options.

4. Know Your Rights

Familiarize yourself with the rights and regulations that protect travelers with disabilities. In the United States, laws such as the Americans with Disabilities Act (ADA) mandate accessibility standards for public spaces, transportation, and hotels. The country you are traveling to may have similar laws. Understanding your rights as a traveler can empower you to advocate for yourself if something doesn’t seem right.

The Air Carrier Access Act makes it illegal to discriminate against people with disabilities at all airports and airport terminals for all commercial flights traveling to, from, or within the United States. Some of the rules within this law state that airlines can’t require you to travel with someone else just because you have a disability. You have the right to travel independently, and the airline must provide accommodations so you can do so safely and comfortably without needing another person’s help.

In addition, the airline should provide help with getting on and off the plane and stowing assistive devices. Airlines are also responsible for returning assistive devices (like power wheelchairs) to passengers in the same condition as they were before the flight. If anything is damaged or lost, the airline should pay to fix the problem.

5. Stay Flexible and Patient

“The funny thing is, things do always go comically wrong, never the things we worry about, and those make the best stories when I return,” said a mySMAteam member.

Even when you’ve planned ahead for every possible scenario, traveling can be unpredictable. But it’s important to do your best to stay calm and recognize that plans may change.

Prioritizing self-care can help ease the stress of traveling. Pace yourself during your journey, allowing time for rest to minimize fatigue. Practice mindfulness and self-compassion, acknowledging and accepting that challenges may come up.

Additionally, you can promote awareness by advocating for more inclusive practices. If you’re happy or unhappy with how things go, providing feedback to businesses and organizations about their accessibility efforts can make a positive difference for others.

Always approach roadblocks with a problem-solving mindset. Ask for help when you need it, and stay open to creative solutions. Remember, setbacks are a common part of travel, and being flexible can help you navigate them with resilience and grace.

6. Connect With Others

If possible, get in touch with people in your SMA network who are located along your travel route. They may be able to offer resources or tips to make your trip easier. On mySMAteam, members share their thoughts on traveling with SMA.

“Don't get discouraged!” said a mySMAteam member. “We love to travel. And yes, it sucks to bring all the extra stuff you need for daily living. This is what we do with the unfortunate fact of weakening. I put my toilet riser on the other side of a big suitcase. I use a Go Go scooter, which breaks down easily. It's definitely an adjustment, but I don’t want to give up on seeing different places and meeting new people.”

Advocacy organizations can provide valuable support and resources. Reach out to organizations such as the National Disability Rights Network or the International Society for Disability Rights for guidance and assistance. They may offer travel tips, accessibility guides, and advocacy services to help you navigate challenges while traveling.

Find Your Team

On mySMAteam, the social network for people with SMA and their family members, more than 2,500 members come together to ask questions, give advice, and share their stories with others who understand life with SMA.

Have you had a successful road trip in the United States or an international travel experience with SMA? If you have a child with SMA, what steps did you take to help avoid meltdowns with your little one on long travel days? Share your experience in the comments below, or start a conversation by posting on your Activities page.