FOUR-YEAR-OLD Jordan Anderson's little body is failing him gradually the result of a deadly genetic lottery.
It will be another year before parents Vanessa and Graeme Anderson, of Karratha, can find out whether the odds have dealt their twoyear-old son, Cody, the same tragic fate.
Jordan has Batten disease, a rare neurological disorder affecting mainly infants and young children. There is no known treatment or cure.
He is one of only six cases in Australia - one other in WA. He was learning to walk and talk when, at 2'/z, his eyesight began to fail. Then he began to have seizures.
About six months and a multitude of tests later, doctors diagnosed Batten disease -often mistaken for epilepsy and mental retardation.
"It's degenerative," Mrs Anderson said. "He's lost all speech, eyesight. He can't get up on his own or take steps on his own. He's mostly fed by a tube.
"It's hard seeing your child going through that, but once you come to terms with it, you just try to make his life comfortable and try to do thins that he'll enjoy and you'll enjoy, and just try to lead a normal life."
Mr Anderson said it was a one in a million chance that he and his wife, who did not know they were both carriers of the disease, would meet, marry and have children. "You both have to be carriers to pass it on and you have a one in 25 chance that your offspring will have the full-blown disease," he said. "So Jordan's got it and now we've got to wait until Cody's three to have him tested."
Two things have given the couple hope - the identification by United States researchers of the gene responsible for the disease and the generosity of the people in Karratha and Dampier to a trust fund for Jordan's medical expenses and US research.
Because there are so few cases in Australia, there is no formal government aid and no research. The burden falls on parents.
Seven friends of the Andersons helped run a ball in Dampier last month which raised about $18,000 for the Jordan Anderson Batten Syndrome Research Trust.
Mrs Anderson said that finding the gene was a positive step toward a treatment, cure and antenatal testing .
"In Jordan's case, whatever they do they can't reverse what's happened and it's happening very fast for Jordan," she said. `That's why we are feeling sort of rushed to help researchers. . We don't want them to run out of money.
"You don't want any other child to have to go through this. The sooner they find a cure the better."
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