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Time running.pdf


									Time running
out for teen
Ibrahim Arif is losing his                            other people who have lung problems,
                                                                                              he said.
                                                      pancreas problems or ear problems,"
battle with cystic fibrosis                           "It would be good if the Government
                                                      supported it — they can help save lives. We're
                                                      still at square one. "
but cord blood stemcell
                                                          Cystic Fibrosis Australia WA chief executive
research may help others                              Nigel Barker said about 300 West Australians
                                                      had cystic fibrosis, of 3000 nationwide. About
like him, Flip Prior reports                          one million healthy Australians also carry the
                                                      cystic fibrosis mutation and if one of those has
                                                      a child with another carrier, they have a
                  Arif, 19, says he "hates going to   one-in-four chance of having a child with the
         hospital" — and it's not hard to see why.    disease.
         Since childhood, the young cystic               Murdoch Children's Research Institute's
Ibrahim  fibrosis sufferer has been poked with        Bob Williamson is investigating whether the
         countless needles and swallowed              stemcells from cord blood could be
thousands of tablets as he battles the deadly         transformed into lung lining cells, which could
genetic disease that causes sticky mucus to           then be delivered by nebuliser into the chest of
build up in his lungs, causing infections and         sufferers to rebuild their lungs.
reducing his breathing capacity.                         He said scientists had so far succeeded in
    "Every day is just painful and tiring," he        turning the stemcells into cells that made lung
said. "And I hate needles. I just don't want it       proteins, but they had to be "given a push
anymore — I'm well over it."                          down the line of cystic fibrosis making cells".
    In 2006, Mr Arif 's mother was one of the             "As in so many medical research programs,
first WA women to sign up to Australian Stem          it always seems to take a frustratingly long
Cell Healthcare's free cord blood bank service        time," Professor Williamson said. "It's now
for families of children with cystic fibrosis.        known that stemcells can be used to treat
    Since then, six other WA families have had        diseases such as eye conditions and diabetes.
siblings' cord blood stored in the blood bank in          "This has not yet been translated into results
the hope researchers would be able to find a          for cystic fibrosis. Before we could use any-
treatment within the next decade.                     thing on a child with cystic fibrosis, we would
    However, time has run out for Mr Arif —           need to be absolutely certain that it was safe. "
the frail teenager has been given just a year to         Mr Arif 's father Max said while it was too
live. As he cuddled his little sister Lily, 3, in     late for his son, he hoped others would benefit
Royal Perth Hospital, Mr Arif said he hoped           from the research. He said it was a joke that
stemcell research would eventually help other         politicians were still talking about legalising
people like him. "It could help other kids,           stemcell research and arguing about ethics.
Genetic lottery:   Lily   Am   hugs brother   Ibrahim who is battling cystic f ibrosis.   Picture:   Sandra Jackson

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