Kids & Heroes

Shane was just 12 years old the first time he donated lifesaving cells to his sister, Nicole.

Shane, 13 and Nicole, 8 - one year post-transplant

Nicole was diagnosed with an adult form of leukemia when she was
just seven years old. Her only hope for survival was a bone marrow
transplant so the search was on for a matched donor.  There is
about a 25% chance of finding a match in the patient’s family and in
this case, Shane turned out to be the perfect match. But Shane was
just 12 years old – could we ask him to do this for his sister? Here, in his own words, Shane talks about the experience of being his sister’s lifesaving donor, if only for a few years:

I recall knowing that my sister was unwell, gravely so, though big words like Leukemia meant only something with negative connotations at the time. Being asked to consider donating bone marrow didn’t strike me as being an exceptional request. I recall thinking, perhaps through the rose colored glasses of personally redacted history, that if this is what was required for my sister to become well then there really was no question of whether or not I would donate. The question seemed to be almost absurd. I could act and offer my sister a chance at life, or not and watch her die. Even in the confused mind of a 12 year old boy the question was not a hard one to address, and I recall being immediately certain of my answer, despite my mother graciously advising me that it was truly my choice as it involved a medical procedure for me as well. She explained that I would feel no pain but that afterwards, I might feel a bit sore for a few days. Balanced against the certainty I had about my sister’s fate, the choice was very obvious to me.

The stem cells from my marrow found a good home in Nicole where they set up shop and produced perfectly healthy blood for six years. However, just before her 13th birthday, she experienced a relapse but this time with a much more aggressive type known as Acute Lymphocytic Leukemia.

I was 17 at the time and was again approached to donate more stem cells, this time involving only a simple collection from my arm through a process called apheresis. At this age, I had a far greater appreciation for the concept of death, and the implication of Nicole’s illness struck a far deeper cord than it had when I was younger. Again the decision was a simple one; offer my sister the chance to live and for a family to be happy at no expense to myself, or selfishly decline on the thinnest of grounds that I might be uncomfortable. In the end, although the second infusion of stem cells eradicated the leukemia, Nicole died just after her 14th birthday from a transplant complication known as Graft vs. Host Disease. I trusted that medical science had done all it could. Without donating the first time, though, Nicole never would have had the experiences she did in life; been able to play with her friends happily for as long as she did, put up with her brothers hassling her as only brothers can, or paying back the love her family gave her with her own contribution as a wonderful person in their lives, painfully brief as that experience was for the rest of us.

This is the first time I’ve shared publicly the poignant experience of being a stem cell donor for my sister. I know that there are thousands of children and adults desperately searching for a matched donor because no one in their family was a match. I also know what it’s like for the patients – and their families – to live in fear of not being able to find that one lifesaving donor.

I encourage you to contact a bone marrow registry near you to learn
more about joining as a potential donor.

Google the appropriate registry from this list of international centers to connect with them or contact your local blood center to learn more.Following are direct links for the U.S. and Australia:

Australian Bone Marrow Donor Registry
Be The Match

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