from The West Australian:
Perth teenager Ryan Lilburne is in a desperate race against time to find a suitable bone marrow donor before he develops a life-threatening aggressive leukaemia.
The 15-year-old was born with the blood disorder Kostmanns syndrome, which prevents his body fighting infections, and in February he received the news he had always dreaded — his bone marrow was evolving into a pre-leukemic state and he urgently needed a transplant to save his life.
His mother Natalie said hearing the test results had been devastating. “It was like someone ripped out my heart and threw it away,” she said.
The Lilburnes had always known Ryan was likely to develop leukaemia but they tried to keep it at the back of their minds and enjoy each day.
Mrs Lilburne said the hardest thing for family members was finding out they were helpless to save Ryan because none was a suitable tissue match.
There are no matching donors on the Australian Bone Marrow Donor Registry.
Mrs Lilburne said she was now appealing for more West Australians to register. “We are relying on the goodness of a stranger to offer their bone marrow to save our son’s life,” she said. “Ultimately we might not be able to help Ryan but we might be able to help someone else (who needs a transplant).”
Ryan has started chemotherapy to buy time while doctors search for a donor but the chance of a successful transplant decrease the longer it takes.
Tina Carter, director of the blood and marrow transplant unit at Princess Margaret Hospital, admitted Ryan urgently needed a donor. “He is at risk of developing a severe, aggressive leukaemia that is very hard to treat,” she said.
Ryan admitted he was scared but tried to stay positive, thinking of the benefits of a transplant. “I could be healthier after it and live a normal life,” he said.
City of Perth Surf Life Saving Club has organised a registry session on May 10 or potential donors can call the registry direct on 9421 2886.
•For more information and answers to FAQs on becoming a bone marrow donor, see the Australian Bone Marrow Registry website. Even if you cannot help Ryan, you may be able to save someone else’s life. The Bone Marrow Donor Institute has even more answers to frequently asked questions.
• The Princess Margaret Hospital Foundation (PMH Foundation) is the official fundraising body for Princess Margaret Hospital for Children (PMH), Western Australia’s only specialist children’s hospital. More info on the Foundation here, and web site for the Childrens Leukaemia & Cancer Research Foundation (Inc.) here.
•For a message from Ryan’s parents, go here.
CHANGE SOMEONE’S LIFE. GIVE THEM THE CHANCE OF A LIFETIME. BE A REAL LIFESAVER.
UPDATE: via JP, American bone marrow registries here and here.
UPDATE #2: (23 April 11:46am) Andrew Bolt, often pilloried as a nasty right-wing head-kicker by the “caring compassionate Left,” demonstrates that he does indeed wear a White Hat, in using his widely-read blog to give further publicity to Ryan’s quest. Onya, Bolta.
UPDATE #3: via Emru Townsend, who’s looking for a donor himself, here is an international list containing contact details of different countries’ bone marrow donor registries.
UPDATE #4: 09/08/08 Ryan has now received a stemcell transplant from a French baby’s umbilical cord which proved a match. It has so far successfully engrafted, but of course he is still very ill and the risk of GvH (graft versus host) and other complications are still very real and he won’t be fully “out of the woods” for months if not years. Our thoughts and prayers for a speedy and full recovery go out to Ryan and his family. Best of luck, mate. Lots of people cheering for you.
UPDATE #5: 11/11/08 Ave atque vale, Emru. Rest in peace.
Emru received a bone marrow transplant in September 2008.
While the donor’s stem cells completely engrafted and began producing healthy blood cells, Emru could never get into full remission and always had some leukemic cells in his body, which continued to spread, and he died peacefully on November 11, 2008.
However, there are people who are in a much better position to recover fully from a stem cell transplant who never find a donor and have no choice but to suffer the same fate as Emru. Registering can help save one of the other 16000 patients worldwide waiting for a bone marrow or peripheral blood stem cell transplant.