As many of you may be aware, cadet member Ryan "Rabbit" Lilburne is currently undergoing chemotherapy in PMH and is in desperate need of a bone marrow transplant. Unfortunately, after searches around the world, a suitable donor has not yet been located.
Representatives from the Australian Bone Marrow Donor Registry will be at the club on Saturday 10 May between 9am and 12 noon to sign people onto the registry.
Ryan was born with a blood disorder called Severe Chronic Congenital Neutropenia or Kostmanns Syndrome. He was diagnosed at 13 days old and thankfully there was a medication called GCSF which has kept him reasonably well for the past 15 years. It was always known to us that this condition would turn into Leukaemia and unfortunately the time has come.
Ryan has had regular bone marrow aspirates (tests) done over the last 15 years and every time it's come back OK but this year is different he now needs to have a transplant as his bone marrow has changed and what they call blasts cells have developed.
The family have all been tested by the Bone Marrow registry and with no success so now we have to rely on an unrelated donor that is tissue typed the same as Ryan to save his life. The Australian Bone Marrow registry has no local matches for Ryan, and are currently looking overseas to try and find one.
Ryan has had one dose of chemotherapthy already and is holding up OK but if we don't hear from a donor soon he will have to have another dose of chemotherapy until we can get a donor this is really buying the doctors some time to find some-one.
If you are between the ages of 18-40 the bone marrow registry needs you on their data bank. You may not necessarily be able to help Ryan but you maybe able to help someone else, whether it be a child or an adult with leukaemia or cancer or some other condition that requires a bone marrow transplant.
To go on the registry costs you nothing - there are certain requirements but only the blood bank can ask you those questions. But if you are able to help, please ask them to put you on the bone marrow registry. A sample is sent off for further testing.
If you happen to be a match for someone there is no cost to you, they only ask for your commitment and your time so please get all the information from the registry and join up to save a life. You never know we could have a match for Ryan right under our noses, but even if we don't with your help we could all be potential life savers to someone that is dying and being on the registry can save their lives by not having to look too hard for a donor.
To possibly help Ryan and/or other people in Ryan's situation the club is organising a drive to encourage members, friends and supporters to become members of the Australian Bone Marrow Registry.
Representatives from the Australian Bone Marrow Donor Registry will be at the club on Saturday 10 May between 9am and 12 noon to sign people onto the registry. This will involve giving a blood sample and some paper work. The drive is not restricted to club members so please help spread the word to family and friends. You must be aged between 18 and 40 to be eligible and in good health.
To help with planning and to get an idea of numbers please email if you plan to come along. Please note that it is not imperative that you email, if your plans change and you can make it on the 10th please come along.
If you cannot make the 10th and still want to join please call the registry direct on 9421 2886 to arrange a suitable time.
The Lilburne family are dedicated members of the club and nearly everyone will have come across Nat, Bruce, Dan and Ryan either in the kitchen, on the beach, in the water or in the gym. Our thoughts and best wishes are with them at this time.
We encourage you to come along and sign up. A selfless gift from a healthy person can give another new hope and health.
More information:
- Australian Bone Marrow Donor Registry Brochure
- How To Join The Australian Bone Marrow Donor Registry
