By Sheri Coil
When making your reservations, explain about your situation and EB and ask to reserve the bulkhead seats where there is more room.
Pre or Early Boarding:
Most all airlines provide for early boarding for the elderly, babies and the handicapped, but not all do this automatically. With some airlines you have to ask for them to let you pre-board. So ask while you are checking in.
Take a sheepskin or fuzzy blanket (especially handy in case of turbulence), cuddly lovies, stuffed toys.
Be sure to take food and drink that your child can and does eat. Things like pediasure, juice in small travel containers, finger foods. The airline offerings are often less than perfect for our EB kids to eat.
Pack appropriate things that will keep your child entertained on long trips or if you may have long layovers or waits in airport lounges. Things like coloring books and markers or crayons, books to read or be read out of, hand held games (that are silent or have a sound off button) are good to take. Another idea is to bring some new small toys they have never seen.
It is a good idea to carry on two bandage changes and at least one change of clothes for your little person. Also, be sure to have at least several days worth of any medications. Lost luggage is a fact of life with the airlines today. Be prepared for it by carrying what is most important, like medical supplies for a couple days. If you are going to be staying somewhere for any amount of time, send excess supplies of bandaging and a few favorite toys ahead
Make sure your wheelchair or stroller is designated “gatechecked” at the ticket counter. You will be able to take it right into the door to the plane, get out and then they will stow it for you, to be returned upon landing at the door of the plane again.
Not So Nice:
Unfortunately not everyone is kind and open-minded or understanding. In fact some airlines have been known to be downright nasty and suspicious of people with EB. They have been refused boarding because someone takes it upon themselves to decide that the innocent is guilty of having some sort of contagious pox disease until proven innocent. Thus, it is advisable to carry literature on EB and a Dr’s clearance that your child is not communicable and has a genetic condition. As much as it does not seem right to have to do this sort of thing, it could save a lot of heartache at the gate.