XP and the European Space Agency
XP and the European Space Agency In June, Sandra, Alex and Holly Webb
attended the Paris Air Show at the invitation of the European Space Agency to
present the first prototypes of the protective clothing for XP patients. Alex
had been testing out the face mask for two weeks prior to the show, so was able
to give his views. The new mask does not yet meet all the requests that we put
to the Space Agency, but we have been told at each stage of the prototypes one
or more of our requests will be tested out.
At the Press conference we were able to see for the first time the proposed
undergarments which would offer full protection of the body. The undergarment
could be an all in one or 2 piece suit. A cooling mechanism was incorporated
into the garment which was controlled by small back pack which would weigh a
maximum of 1.5kgs depending on the size of the child. The device could operate
for two hours continuously, thus allowing a child to play outside for a
substantial time without getting too hot.
We feel very positive that the Space Agency has as its main objective to have
a production suit ready in 2004 and the funding to provide a suit to every XP
child in Europe.
Alex looking at the prototype face mask and suit with
Mme Haignere, French Minster for Research. Photo courtesy of the European Space
Agency)
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