Book details history of bone marrow registry

Dr Charlotte Ingram (medical director of the SABMR), An-Louise Louw (recipient), Joshua King (recipient), Maximillian Klausing (German-based donor), Ricki-Lee Hamman (recipient) and Chris Schutte (donor).

To mark 25 years, the South African Bone Marrow Registry (SABMR) decided to collate its journey so far in a book An Uncommon Gift which is subtitled: The story of the South African Bone Marrow Registry and the lives changed by stem cell donation.

SABMR was established in 1991 to provide compatible unrelated bone marrow donors for South African patients with life-threatening blood disorders. To date, this non-profit organisation has facilitated stem cell transplants for 383 patients in South Africa.

Based at Groote Schuur Hospital, the SABMR is Africa’s only bone marrow registry supporting an active transplant programme. Only a minority of patients needing a bone marrow transplant will find a matching donor in their family.

For more than 70% of patients, their only hope is to find a donor identified by the SABMR. However, the chance of finding a compatible unrelated donor is approximately one in 100 000. To increase chances of finding a match for local patients, the SABMR collaborates with 75 other international registries.

“At the SABMR, we believe that our stories and the knowledge and experience we’ve developed over the years should be shared with other organisations working in the non-profit sector, as well as within the South African civil community,” said SABMR medical director, Dr Charlotte Ingram.

“By sharing our history and our patient and donor stories, we believe we will engage with many more South Africans who will be encouraged to become donors and help us grow our reach, both locally and internationally. This book, showcasing the SABMR’s two-and-a-half decades of commitment and work, gives us the opportunity to do just that.”

Zolani Mahola, lead singer of Freshlyground and a supporter of the SABMR, lent her voice to the book.

“I registered as a donor after a friend was diagnosed with a bone marrow disorder, If we can help each other, why not?

“I feel it’s almost a civic duty: there are so many things we could do to assist others that might put us way too far out of our comfort zones, but this is something we can do and we should do. It would be an honour for me to have even a chance of saving someone’s life. That’s not something you get every day. That’s really being of service”, said Zolani.

An Uncommon Gift includes the SABMR’s history, information on the donor search process, the medical aspects of stem cell donation, and comment from those involved in a bone marrow transplant such as donors, stem cell couriers, doctors and nurses, the staff of the SABMR, their network of international registries, fundraisers and recruiters such as The Sunflower Fund, the SABMR’s key recruitment partner.

This inspiring book shares many moving stories of the SABMR’s patients.

Readers will meet men and women who are grateful to be seeing their children and grandchildren grow up, teenagers who recovered and are living their dreams, and little children who defied medical odds and are now thriving at school.

Included is a selection of the heartfelt letters written by bone marrow recipients to their anonymous donors. As one wrote, “He has given my siblings a brother, my children a father, and my wife a husband.” Another donor wrote, “I have a future again, I can make plans again, I can again allow myself to dream, I now notice and appreciate things that I previously took for granted.”

A family wrote, “There are not enough words to describe how eternally grateful we are for your unselfish act of kindness, to give some of yourself to save a life you don’t even know.”

Another patient summarised the process in a thank-you letter to his donor, writing, “Bone marrow transplantation is much more than a physical miracle. It is a bonding of humanity.”

The book will be available through the SABMR office. Email admin@sabmr.co.za for more information.