Special Needs

Practicalities Other Special Needs Reader Report 

Travel with Cystic Fibrosis - Winter 1998

Katy Harrison's daughter of 19 months was diagnosed with cystic fibrosis in April 1998. The condition means you lack part of a gene which enables you to thin mucus, so tending to problems in the lungs and a blockage in the pancreas so you can't absorb certain fats and sugars. You have to have at least twice daily physiotherapy, be given antibiotics twice a day and enzymes before every meal (including all snacks) as fats and certain sugars can't otherwise be absorbed.

Not surprisingly the parents felt they needed a break and they chose the Algarve because friends with staff at Something Special [Self-Catering] who could advise on places which would be easy for them.

"We needed to make sure we had a specific villa so we knew where we could contact a doctor in case Jessica got ill. We needed somewhere we could feel safe. We had to get a video because for the physio Jessica has to lie still for quarter of an hour in the morning and at night and the only way I get her to do that is with a video.

My main problem was getting holiday insurance because the majority of holiday insurers will not insure a child with cystic fibrosis. I contacted the Cystic Fibrosis Trust tel: 020 8464 7211 and they gave me a list of 11 companies to ring. The insurance came to 89p more than normal insurance. We had to do a medical check over the phone and that was it.

We had a lot of hand luggage because we needed to be sure we had needles, syringes, all Jessica's medicines plus an extra weeks' supply just in case, and a nebulising unit (for the physiotherapy). We just explained what it was on check-in and they said no problem, in spite of it being quite a heavy bag.

There was only one problem and that was on board the plane. Because Jessica is so tiny we have to break open the enzyme capsules and mix them with apple juice before the meals. There was very little space for doing that and we got by giving her low fat food, but it wasn't ideal and I wouldn't like to try it longhaul."

Katy Harrison
Hertford