A Parent's Guide to Flying with a Child with Rett Syndrome

By Jennifer Endres
With Colleen English
August 7, 2015

A parent contacted me a few months ago asking for tips for flying with his daughter.  She has never been on an airplane and I was a bit stumped because we haven’t taken our daughter on a plane since she was very young (and much smaller and less involved!).  I reached out to my friend and fellow Rett mom, Colleen English, for advice. Below you can read Colleen’s experience, learn top tips for flying and see some of our girls up in the air!

Colleen's Experience

We have been flying from San Francisco, CA to Boston, MA for the IGF-1 trial. We’ve made five trips in 14 months and I have to say the flights have been a breeze once I figured a few things out. We fly Virgin America and have found them to be nothing short of fabulous. There has never been damage to the wheelchair, staff has bent over backwards to offer help.

Checking equipment hasn’t been a problem. When you check in, you can check a car seat at no cost as well as any luggage that is exclusively medical supplies. We bring one bag with us on the 10-day trips that is all diapers, food and braces. By keeping it all together it doesn’t count against your baggage allowance.

Claire walks but only with assistance. I found that by calling the airline and explaining the issue, they moved our seats free of charge to the bulkhead behind first class. This allowed for Claire to walk the short distance from her chair to the seat on the plane. Once on the plane, I have discovered the benefit of rolled blankets and towels for positioning, they go a long way! I use one behind her to make up for the seat depth and then one on either side.

The best thing you can do is go to the websites of the TSA and the airline you fly. Call the airline in advance and ask questions. You can take as many liquids as you want through security if they are for your daughter’s medical needs. We bring Claire’s juice as water is too hard for her to swallow; we also bring the little squeeze baby food packs. If you get the 3.5oz ones security is a little easier. Also, having the liquids in clear containers instead of opaque ones lets them test without opening and things go easier.

Our daughter has had seizures on the plane and while it isn’t fun, it is something that you can live through and in my opinion, is worth it to travel and go out there and live well. Bring every drug you might ever need on the plane with you. It is a pain but really worth it. We give Claire Benedryl during the flight to help keep her nose clear so she can breathe and that has been a big help.

I think that you will find that traveling with your daughter will show a new side to humanity in airports. Some of the nicest people I have met have been sitting next to us on a plane. People really love seeing Claire out in the world and tend to reach out and help, it’s a fun thing to do if you are up to it.

Top Tips for Flying

  1. Be sure to pack an iPad, headphones and extra clothes – Sam
  2. Have a juice box ready along with some crackers during take off and landing.  This helps to avoid pressure in the ears. – Lisa
  3. You do what you have to do to take care of your family, let the flight attendants worry about the other passengers. Board first, get off last and change your child before you get off. –Suzanne (flight attendant and mom)
  4. Get a non-stop flight whenever possible. – Tabitha
  5. Look into the Cosco Scenera carseat – it is FAA certified, has a good buckle, full harness, light weight and inexpensive at Walmart; use a “laptop strap” on it for easier carrying. – Susan
  6. Sit in the bulkhead seats if not in First Class; this gives you more room. – Lisa
  7. Allow plenty of extra time. – Heather
  8. Double diaper – remove the dirty one instead of having to do a full change. – Donna
  9. Pack snacks your daughter will enjoy as well as an extra blanket and music. – Tamta
  10. Call the airline ahead of time to explain any issues you think could arise. – Colleen
  11. Look into C.A.R.E.S. FAA-approved seatbelt adapter and add a little Dycem under her bottom to avoid slipping. – Paige