Some More Links

Waterless ltd. is an online store where you can buy hair and body personal hygeine products that do not require water. For example, soap that you just rub on and it cleans and then evaporates. Hand sanitiser gel that you just rub on and it disinfects and then evaporates after a minute or so. Shampoo and conditioner that is massaged in and then towel-dried as normal, with no rinsing required. These could be very useful in hospital or bedridden at home, as well as when travelling. Here is the link:

http://www.waterlessltd.co.uk

I have added a link for cpaps and bipaps because if you can't get funding to buy a bipap machine it can be extremely difficult to find them, and even more difficult to get one at even a semi-affordable price. So here is a link to a website that sells second-hand cpap and bipap machines. A person with leukodystrophy will probably benefit best from a bipap machine because they assist with breathing out as well as breathing in. The link is American, but it should be possible to order it - though you may need to contact the seller for importation tax rates and delivery costs.

http://www.secondwindcpap.com/Used_CPAP.html

When using a bipap giving the person dry air can cause a dry nose and mouth, and sometimes bleeding from the nose. To get around this problem a heater-humidifier can be bought which delivers heated, humidified air. Some bipap machines come with a built in heater-humidifier. Distilled, deionised water should be used rather than tap water, otherwise you'll get problems like limescale. Another problem is rainout - where water collects in the mask and pools on the face. This can be overcome by making sure the hose tubing through which the air flows into the mask doesn't get so cold that condensation can form on it. This can be done by purchasing a bipap hose insulator, which is reasonably cheap and they can be attractive looking. They are easy enough to find on ebay and amazon among other places, but here is a link to start with:

http://www.eu-pap.co.uk/6ft-fleece-tube-wrap-white.html

My last link is to an oxygen concentrator. If the person with leukodystrophy is suffering from a respiratory infection or any other thing that makes their oxygen levels drop despite using a bipap, a relatively cheap and portable way of providing that oxygen is by using a concentrator, rather than a cylinder. This takes air from the room and modifies it in such a way that the oxygen content is increased. Here is the link. Again it is American, rather than British, but it may help nevertheless.

http://www.oxygenconcentrators.org/info/eclipse/