Holiday to America with DMD and a ventilator

Thanks everyone for the very informative replies, its really helpful to hear about everyone’s different experiences. Im afraid it looks like just under £2000 is the cheapest quote I can find, from a company called Free Spirit, has anyone ever heard of or used them? Virgin do seem to be the most supportive airline if their website is anything to go by, they offer a few different seating options and they have a very detailed page about “respiratory assistive devices” as they call it.

@ambitiousturtle24 wrote:

I’ve flown back and forth to the US a few times myself. Virgin Atlantic although one of the more expensive airlines have a “Burnet Body Support” for passengers like us (high risk of pressure sores and limited movement). It’s basically filled with tiny beans that are more the size of beads and has a full seat, back and arm coverage. Only downside is if you’re in economy like I was this support system takes up inches on either side of your already narrow seat! So I was a bit squished. I then flew with British Airlines who told me I could take my own cushion and use it on the plane as long as the seat belt still fit around me (if I had trouble they also have an extender one that they use for when babies are flying so they can still sit on their parents laps during take off and landing). I bought a “wonder” cushion specifically for the flight to prevent the need of a MILLION flight pillows to prop myself up with as you know flight pillows are a quarter of the size of your standard decorative couch cushion i.e TINY! I’d recommend getting one of those travel neck pillows too as that was one of things I regretted not buying for the flight. My neck got so sore from being in the one position and would start to flop with fatigue. There’s my “2 cents”

Thats really good to know about the Burnett Body Support AT24. Sorry if this is a bit personal but are you big built or small? Its just because if you are small but still felt squished with the body support, then theres no way that I would fit into it! Im not huge but Im not small either. When you sat on your wheelchair cushion on the plane did you not feel really high up? And did this not make the armrests feel really low? My Jay cushion is pretty thick.

Thanks to everyone on here for their helpful replies, but it looks like my return to Florida wont be happening, but ironically taking my ventilator on board isn’t a stumbling block – instead, its my bloody cushion! As I said previously my cushion is a Jay cushion which means it is gel filled, and I have found out from Virgin Airlines that because of various terrorist attacks, in 2006 a rule was brought in prohibiting people from taking anything gel filled on board an aircraft. Basically my cushion will not be allowed through security for this reason. But not only does this mean I cant sit on my wheelchair cushion during the flight, this means I cant have my wheelchair in the hold because I cant use my wheelchair without my Jay cushion. Im so disappointed about this, the last time I went in 2004 there was no problems with having my wheelchair and cushion stored in the hold, but so much has changed with security since then. My problem is there is no way I could sit on another type of cushion for 2 weeks, I have tried many different cushions in the last few years but I keep having to return to my gel filled cushion because the others have been far too uncomfortable for me.

So this appears to be the final nail in the coffin not just for me returning to Florida, but for going abroad anywhere. I cant go somewhere without my cushion, therefore I cant go on a plane, and I wouldn’t want to travel in a boat. What are everyone’s thoughts on this? What cushions have you all used, and has anyone ever been refused through security because of their cushion? I know Im now clutching at straws, but any suggestions would still be much appreciated. Thanks!

Thanks for the replies, yeah my neurologist and respiritory doctor both agree that I am still fit enough to be able to fly. Im not sure if I can push Virgin any further because its not the airlines who made this rule, its airport security so I don’t know if its the government who brought in this rule? Or the Civil Aviation Authority? Somebody in Thomas Cook suggested I contact Glasgow Airport to check and also the Brittish Embassy in London and see what they say.

Is it possible to contact Richard Branson directly? I thought he would be far too busy to deal with emails and phone calls from an ordinary pleb like me lol. Do you have a contact for him? What do you folks think? Is it worth me trying to take it further?

Well it looks like my return to Florida may be back on after all! Last week I got a letter back from Virgin saying that because Richard Branson is so busy he is unable to respond personally to all of his correspondence, and so someone from the Virgin Special Assistance team would be in touch. So a few days later I recieved an email from them saying that someone would phone me to discuss my issues because they feel that I may have been misinformed about this. So yesterday afternoon I got a phone call from someone called Sue at Virgin Special Assistance and she was extremely helpful. She said that there would be no problem with my gel cushion passing through security and that I can sit on my cushion on the plane as long as the seatbelt still fastens properly and the armrests can still come down fully. She says she doesnt understand why I was told differently before, she says they are well used to allowing disabled people to use gel cushions, ventilators etc. on board because they are the airline who provides the flights for the charity Dreamflight every year, so I dont need to worry about it. She also reassured me about my ventilator which was my other concern. My Nippy 3 is one of the ventilators already on their list of approved ventilators for using on board their aircraft, so there will be no problems with me using it. So I was very relieved to hear this.

I also contacted Glasgow Airport to see what they said and they also said that “your gel cushion is allowed through our security search area , but will be swabbed by our team , this is normal process. Our Security Team Manager on the day will be updated of your arrival and be expecting you , this is not a problem. I am not aware of any specific Virgin airline restrictions for such an item , however I have made enquiries and if Virgin have the cushion listed as prohibited I will let you know – this is unlikely”. Does anyone know what they mean exactly when they say my cushion will be “swabbed”? That makes it sound as if they want a sample of the gel which couldnt be done without taking my cushion apart! Hopefully its just a poor choice of word!

So the only hurdle left for me now is I have to go to the Respiratory Lab at the hospital for a “Fitness to Fly” assessment. I am intrigued as to what this will involve, I think they will put me into room with similar air conditions to what I will experience during the flight and see how I cope with it. It all hinges on the outcome of this test then, as to whether or not I will be going abroad. Keep your fingers crossed for me :-)