Whakatane woman Keri Topperwien knows the struggle all too well. Her 3-year-old son Chace, who was part Maori, died of leukaemia in 2012 after a donor could not be found.
"Finding there is no donor match is harder than the cancer diagnosis when you believe that medicine and technology will be enough," she said.
She now campaigns, through the Dream Chaser Foundation she set up with husband Ryan, to address the cultural barriers to bone marrow donation and to encourage people to offer themselves as potential donors.
Topperwien said barriers to becoming a donor included simply not knowing about it, fear of the process and cultural objections to donating blood and organs because the body was considered sacred.
Jake Cooper, 13, who lives in Perth but has family in Auckland, is now in Chace's position, desperately needing a bone marrow transplant.
He has an extremely rare form of blood cancer known as CML (Chronic Myeloid Leukaemia) and with a mix of Samoan, British and Australian heritage is yet to find a match.
Jake and his mother, Renee Cooper, recently flew to New Zealand after learning about the Dream Chaser Foundation.
While here he filmed a short video with the foundation, which was shown at Sole Mio concerts to bring donation awareness to the Pacific community.
His condition is being managed with oral chemotherapy twice daily until a match can be found.
Until then, his mother, who has been searching for a match for nearly three years, is pleading for men of Maori and Pacific descent to donate.
"[It's] mainly due to the lack of Maori and Pacific Islands registering that we don't have a match," she said.
"When and if the time comes [that there is] no match and no transplant, I refuse to acknowledge or accept the result of that."
Dream Chaser Foundation & NZ Bone Marrow Donor RegistryJake from Jake's Quest For a Cure and his family had a busy Christmas & New Year break, flying to New Zealand to encourage more Maori and Pacific Islander people to join the bone marrow donor registry in the hope of finding Jake’s & other mixed raced patient's match…such as Lara, a 24 year old young woman also on her lifesaving search www.match4lara.com
You can help by joining the Australian Bone Marrow Donor Registry particularly if you have a mixed race background!
Posted by Ur the Cure on Sunday, 17 January 2016
Cooper said donating was "simple and painless" and attributed the lack of donors to a lack of education surrounding transplants.
"Transplant is all done via blood these days, no trauma to the donor, just the recipient. However the result can mean life."
New Zealand Blood Service spokesman Nephi Arthur said needing a transplant can be a matter of life and death, depending on the situation, but he emphasised that every situation was unique.
"Sometimes a bone marrow is the only option, but we don't want to scare people with an 'if you don't a find a match you're doomed' attitude. There are other options."
Arthur said males aged 18-40 with Maori and Pacific ancestry are desperately needed. Females are not needed as they produce antibodies during childbirth.
"The females need to go back to the males and tell them to donate. Grab your nephews, husbands, bring them in to donate blood. They'll realise how easy it is.
"We've translated brochures in Tongan and Samoan and have gone into the churches to talk to them about it. It's all about education and putting it out there."
A New Zealand Bone Marrow Donor Registry has been created to address the shortage of Maori, Pacific and other minority ethnic group donors.
Donating bone marrow
• 14 non-European Kiwis are waiting for a match so they can get bone marrow transplants.
• 27 million people are on registries around the world as willing to donate. Only 7500 are Maori and 2000 are Pacific Islanders.
• Males aged 18-40 with Maori and Pacific ancestry are desperately needed.
• In order to join the bone marrow registry, you need to meet the blood donor criteria.
• For more information nzblood.co.nz/give-blood/donating-bone-marrow/
