The beautiful 14-month-old son of RAAF Amberley photographer, Rod Skilton and his wife, Robyn, was recently diagnosed with the life-threatening Hurler's Syndrome. A bone marrow transplant is his best chance for survival.

However, bone marrow donation requires an exact match for success - a person's tissue type is directly related to their ethnic origin and only one in 1000 donors will be a match for a patient requiring a transplant in any given year.

Siblings are the ideal donor for a patient in need of a bone marrow transplant, but as an only child, Jack's best chance is finding an outside donor. His parents have appealed for help from the public to find a bone marrow match.

Hurler's Syndrome occurs when the body doesn't produce an enzyme necessary to break down mucopolysaccharides (carbohydrate and sugar complex waste products) causing these substances to build up in all the major organs, muscles and joints.

Over the long term, this build up causes damage to all major organs as well as changes in appearance, curvature of the joints and blindness. If that isn't devastating enough, Hurler's Syndrome particularly affects the brains of sufferers, the toxic build up causing the gradual decline in brain function.

Doctors have told Jack's parents that without a bone marrow transplant Jack will never grow over four feet tall, will be in a wheelchair by the age of five and is not expected to live past 10.

While experimental enzyme replacement trials currently being undertaken in the United States offer some hope to sufferers of Hurler's Syndrome, it will be some time before any treatment would be available in Australia.

In the meantime, Rod and Robyn are relying on finding a suitable bone marrow donor to give their son a chance at life.

Each person's bone marrow has distinct genetic characteristics, half of which are inherited from their mother, the other half from their father.

In a bone marrow transplant the patient's diseased bone marrow is destroyed and healthy bone marrow is infused into the patient's bloodstream. In a successful transplant the new bone marrow migrates to the cavities of the large bones, engrafts and begins producing normal blood cells.

The new bone marrow infused into the patient must match the genetic make-up of the patient's own marrow as perfectly as possible. If it's not a good match, it will recognise the patient's body as foreign material to be attacked and destroyed.

The Skiltons were alerted to Jack's illness just over a month ago when their doctor sent them to a pediatrician after doing a check-up.

Rod said the pediatrician's diagnosis of Hurler's Syndrome had begun a nightmare month for the family. 'All the hopes and aspirations you have for a normal child are gone,' Rod said. 'As far as we know the bone marrow transplant will stop Jack going into a wheelchair, but the main thing is that it will protect his brain. They can treat his heart and other organs with drugs, but they can't use drugs to treat his brain.'

He has urged people to sign on as potential bone marrow donors at their local Red Cross Blood Bank as soon as possible. 'The more people we get on the register the better, even if it's not for Jack, then for someone else,' Rod said. 'I was never a bone marrow transplant donor, because you don't think about it, then one day it lands on your door.'

Being placed on the registry is an easy process - simply donate blood at any Red Cross blood bank or blood van and indicate your wish to be placed on the bone marrow registry. A sample blood is put through a HLA (human leucocyte antigen) tissue typing test to determine if the antigens or markers on the white blood cells of the donor match those on the patient's white blood cells.

The next Red Cross blood bank donation day at RAAF Base Amberley will be held in November and the next mobile blood bank van will be parked in front of the RSL Hall at Ipswich this month.

To find out exact times and addresses of other donation centres or for more information on the bone marrow registry, contact Red Cross Blood Transfusion Service, 480 Queen Street, Brisbane, QLD, 4000 or phone (07) 3835 1381. The Red Cross can also be contacted by fax on (07) 3835 1562 or by email at pauline.martin@srvexc1.arcbs.redcross.org.au

By Chris Versace - Strike publications