Wanted: A stranger to save this boy’s life (updated)

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.




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.


11 Responses to “Wanted: A stranger to save this boy’s life (updated)”

  1. tizona Says:

    Apologize for putting them IN your post…but 😦

  2. spot_the_dog Says:

    Hey, thanks for that, Tiz. Leukaemia is a prick of a disease – and unlike a lot of other cancers, they can’t just go in and cut out “the” cancerous tumor. BMT is the best shot for a cure in a lot of cases, and I would encourage anyone who meets the criteria to at least get themselves on the register. It’s one thing to tick the box on the back of your driver’s license for after you’re dead; it’s another to register to save a life while you’re still alive.

  3. tizona Says:

    Yes it is a prick of a disease. I dearly hope that Ryan, his family and friends, have the best and happiest of outcomes.

  4. Emru Townsend Says:

    I’ve more than got you covered on the international registries, Spot. We maintain a list at healemru.com which currently stands at 37 countries. (We should have 38, but I haven’t gotten around to adding Brazil’s registries yet. I’m hoping to this weekend.)

    The list of registries is right here.

  5. tizona Says:

    Elegant, courageous and fantastic man you are Emru Townsend. All the best to you. It will happen.

  6. spot_the_dog Says:

    #4 Thank you so much for that, Emru. I will update my post with your information straight away.

    Best of luck to you, mate, in finding a match. You’ll have a lot of people keeping you in their thoughts & prayers.

  7. nilk Says:

    I’ve been on the bone marrow register for decades now, although I’m probably ineligible due to age and anaemia.

    They stopped taking my blood because of anaemia, too. 😦

  8. nilk Says:

    Emru, God willing you find a donor soon.

  9. Emru Townsend Says:

    Hopefully, we all will. Good luck to Ryan, Tery, Nicole, Erica, Ellen, and all the other patients I’ve met and read about. If we can mobilize enough people, we’ll all be around in twenty years telling youngsters about the days when people had to wait this long to find compatible donors.

  10. Cool Hand Leuk Says:

    This is quite a up-to-date info and very important, good links too. I’ll share it on Facebook.

  11. brooke woods Says:

    hi im ryans older brothers other half and i was just readin this and it has brought me to tears. im so thankful for everyones help ryan is like a brother to me and is a wounderful kid he has been here for me through alot.. thank you again


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