Stefanie Nicoll holds her daughter Harper, 3, alongside older daughter Akira, 9, and husband Jordan.
The parents of a 3-year-old girl with acute myeloid leukaemia are “desperate” to find a stem cell donor for their daughter.
Stefanie Nicoll, who is based in Perth with her family, says it’s been difficult to find a match for her daughter Harper due to her heritage – Nicoll is “mostly” Italian while her husband Jordan is Māori.
Harper, who turns 4 this month, was diagnosed with leukaemia on October 8.
“With her type of leukaemia, you don’t know the treatment plan until you do the first round of chemo, which is what we did in October,” her mum tells the Herald.
“That took about five weeks for us to get results back to see how well it worked. And there’s basically two categories that she could fall into, either high risk or standard risk. High risk means a transplant, and the standard risk means she can continue chemo. She fell into the high-risk category, which meant that we needed a donor.”
It wasn’t until they were faced with this reality that Nicoll and her family realised how much ancestry matters when it comes to finding a match on the global stem cell registry.
“My husband was born in New Zealand, but his mum is adopted. His dad’s from there as well, but he doesn’t really know his dad. So I guess we’ve never really understood the importance of being on the registry to donate blood and stem cells until this point, now that our daughter needs it,” Nicoll says.
“Now we’re at a point of trying to find a donor, and they’ve come back saying that they’re struggling. We did a little bit of research and looked into the percentage of people that are on the donor list, and unfortunately with our mix, it’s quite underrepresented in the registry.”
Neither Nicoll, her husband, or their older daughter Akira, aged 9, are a full match.
“That’s why we’re at this point of spreading the word, because we are desperate at this point.”
She says if they had known how few Māori-Italian donors there were on the international registry, “we probably would have got the word out sooner”.
“She needs this transplant as soon as possible.”
If a donor isn’t found within the next few weeks, Nicoll or her husband will donate toward a haploidentical transplant – a procedure using stem cells from a half-match donor, such as a parent or child of the patient.
“[It’s] still quite successful, but it’s not like a 100% match. At this rate, they’d rather use us than wait around and do more chemo.”
Another option is Nicoll’s half-sister, who shares her Italian heritage through their dad, but whose mum is Māori.
“I’ve asked the hospital to test her. They don’t usually test within the family, because most likely people within the family aren’t actually a match. Because she is that mix, they’ll go direct to her and test her. She won’t need to go through the system.
“We’re hoping to get her results back within a week or so, and we’re just praying that she’s a match. If she’s not, they’ll use me or my husband.”
She says it would be “so special” if her half-sister turns out to be a match. And while it would be “unreal” to find the right donor for her daughter, Nicoll wants to help get more people on the donor registry in case it can help others as well.
“That’s our goal at the moment – even if they can’t help Harper, just to get more mixed nationalities on the registry."
She wants Kiwis who may be of similar ancestry to know it’s a simple process to become a donor if they are eligible.
“If they are chosen to be a donor, if it’s a bone marrow or stem cell donation, I think people need to be aware that it’s not invasive. It’s not like they’re donating a kidney.
“I think people get a bit scared about it, but the impact that it has on the person they’re donating to is huge. It might take eight hours or something, it might take 24 hours of their time to donate.
“So I think the more people understand how little of their time it takes, then they might be a bit more open to it as well.”
People aged 18 to 35 can register to become stem cell donors. For those who are older than that, with children in their 20s, Nicoll wants them to encourage their kids to become donors.
“I know when I was in my 20s, the last thing I thought of was ‘Hey, I might go donate blood’. Unfortunately, it does take something like this to make you realise the importance of it.
“You don’t really have to know someone to want to do it. I think it would just be a privilege if you were chosen to save someone’s life. It would just be incredible. My goal here is just to get as many people on the registry [as possible], not just for Harper, but for other families.”
If you want to become a stem cell donor, you can ask about joining the NZ Bone Marrow Donor Registry the next time you go to give blood or plasma.
Stem cells are collected from your bone marrow - this can be done through a needle in your arm, similar to a blood donation, or collected from your pelvic hip bone with a needle and syringe under general anaesthetic.
To become a donor, you must be between 18 and 35, meet the NZ Blood Service requirements to donate, and be willing to donate to any patient anywhere around the world. You can find out more about the criteria on the NZ Blood Service website here.
To find a match, a patient’s tissue type is compared with those of all donors on worldwide registries. If you are found to be a match for a patient, you’ll be contacted to see if you are healthy and still willing to donate. Just one in 1000 donors are asked to donate each year, according to the New Zealand Bone Marrow Donor Registry.
Around 25 million of the more than 40 million donors on worldwide registries are of European descent. There are just 6000 Māori and 3000 Pacific Islanders on the NZ Bone Marrow Donor Registry, and it is actively seeking more.
Bethany Reitsma is a lifestyle writer who has been with the NZ Herald since 2019. She specialises in all things health and wellbeing and is passionate about telling Kiwis’ real-life stories.