1p36 deletion and flying with a disabled child

[zoeando]

does anyone in the group have a child with 1p36 deletion, i have found loads of parents in the us but wondered if there were many here. also, does anyone have any experience of flying with a two year old who cant sit up and requires oxygen, i am struggling with finding info on seating arrangements particularly with ryanair

Have you tried contacting Unique to find others with the chromosome disorder? Unique

As for flying with oxygen it's a bloody nightmare. We had to avoid travelling until our daughter was off her oxygen. They don't let you bring your own oxygen, and charge you for using theirs. As for seating, you may need to book two seats and let your child lie across the seats, but they may ask you to hold them on your lap at take-off and landing if they can't sit alone. I found this page for Ryanair Ryanair and special needs travellers

We dont book two seats when we fly. We have just come back from Georgia and Tennessee and are going to rhodes soon. We have a special seat type thing called a Burnett body support. It is a very light bean bag , that has micro beads in it. You put it on the airplane seat, mould it around the child, under the legs, fix the head etc, then attach the pump and you pump the air out. it moulds into the seat shape. It cost 600.00 but we did get some help with funding and its been the best buy ever. Virgin airways carry them on board. My son is quadriplegic, blind, unable to eat and drink, on oxygen and has up to 150 seizures per day. He is four yrs old and we have flew at least four times a year since he was born using this type of seat. Because it uses the planes own seat belt to fasten the child in, you do not need to tell the airline that it is a special seat. We just say that he sits on a cushion and uses the seat belt.

thanks for the info, its given me some great ideas, i will look into the burnett body support and see if we can but one, we are going to the states in november so that would be great, we tried to book with virgin but they wouldnt let me as to use their oxygen my daughter would have to be 13kilos and she is only 10! i am not sure how they would know her weight, but it would be sods law that i wold be found out if i lied about it! as for the oxygen, i have just penned a snotty email to british airways asking how they can justify the charges when some airlines seem allow your own cylinders(easyjet and jet2), i will see if i can get a response from them. i have looked on the ryanair site but cant find details of seating for children, their customer services telephone no is £1.00 per minute! so i wont be ringing that!