12-year-old Mea Richards, first diagnosed with aplastic anaemia in 2022 when she was eight, is still without a full marrow match four years on.

Her mother Nicole told chrislynchmedia.com the New Zealand Blood Service and the bone marrow registry are behind the drive, and while Mea’s story has helped bring attention to it, the need goes far beyond one family.

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“Blood Service Drive tomorrow is for everybody,” Nicole said. “I always advocate for other children. I know there’s many out there that are still looking for donors too. It’s not just based around her.”

Since the family’s story was shared in February, Mea’s condition has shifted again. Nicole said her blood levels are starting to drop, and she has now been identified as having a PNH clone.

“Her levels are starting to drop again, and she’s now got what they call a PNH clone, which is a mutation of a clone, which is cloning within her body, and those levels are increasing now too,” she said. “So we are looking for a bone marrow transplant, which essentially, I don’t want to say cure, but it is the best move forward for both PNH and aplastic anaemia.

“Essentially, it’s bone marrow failure. Her own body, her immune system, is attacking sort of new cells. They don’t get to mature.”

Mea underwent treatment about three years ago, and Nicole said early signs were promising. “She did a treatment about three years ago, which initially did show some really good progress, and she’s been transfusion independent that whole time.”

The transplant will take place at Starship Children’s Hospital in Auckland, meaning months away from home. “Getting to this stage of a transplant is three months away for us in Auckland,” Nicole said. “So we live in Christchurch, so that will be a big trip away.”

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The family had been given a transplant date, but it has since been put on hold. “We did have a date initially, and we had a few things we needed to sort out for Mia, going forward, for when she’s older around some fertility stuff that we needed to sort out before we went to transplant,” Nicole said. “So that’s essentially put a hold on it, and it’s just given us this time now to continue pushing for 100% donor.”

If no full match is found, the family will move to a half match transplant. Nicole, her husband, and Mea’s 16-year-old sister Stella are all potential donors. “Her sister, just like myself, we’re all half matches. Obviously her sister’s marrow is younger, which is better. They don’t want our old marrow. If we don’t get one, we do move to her sister still, but we just thought we’d use the time we’ve got.”

A half match would require a more intensive treatment path. “With the half match for us, it would look like she would have not just chemotherapy that you’d have to have either way, but she actually will have to have full body radiation as well,” Nicole said. “It gives her the best chance having, obviously not a full match marrow, then being given to her.”

Even so, Nicole said there is still hope. “Half matches have actually come a really long way, so we still have a lot of hope that the half match will work just as well. But obviously we want the best that we can get. If that’s 100% donor, then we would use that.”

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Through it all, she said Mea has shown remarkable strength. “She started when she was eight. She is actually a real trooper. We know how she likes things, so we know how to do blood tests and what she needs to make that as stress free as possible.”

The thought of leaving Christchurch is one of the hardest parts. “The thought of losing her here and being away from friends and school, we know it’s going to be tough on her,” Nicole said. “But to be honest, for her, she just gets on with it, and she knows what she’s got to do. We sort of deal with each hurdle as we get there.

“The waiting is hard. We feel like we’re in a waiting room forever,” she said. “We sit in limbo a lot between appointments. With her symptoms at the moment, she’s got a lot of bruising, and if she’s feeling off, or she’s feeling tired or fatigued, there are certain things we need to look out for to know if things are becoming a bit more serious. I’m quite anxious all the time, any little scrape or anything. It is really hard on your mindset and mental health for everybody. But we just have to do it. No other options.”

The family has also been dealing with personal loss. Nicole lost her father late last year, and said support from friends has helped ease the pressure.

“I lost my father end of last year to cancer, so I haven’t really been in the right sort of headspace,” she said. “Especially Kay, doing what she can do, without me having to be the one pushing at all and running it, it’s just given me the space to breathe.”

Family friend Kay has been organising billboards across the city ahead of the donor drive, while a Givealittle page has been set up to help cover costs during the three month stay in Auckland.

“We’re really appreciative of everyone that’s behind us.”

The New Zealand Blood Service drive will accept blood, plasma, and bone marrow registry swabs. Anyone aged between 18 and 35 in good health can join the registry.

Nicole said her hope is the campaign helps more than just her daughter. “There are so many children, and I imagine a lot of adults as well, who don’t have a match,” she said. “For some people, it is life saving.”

Get Tested 5-minute cheek swab No needles Ages 18–35

 If You’re a Match We contact you Blood test Short preparation Donation (like blood donation) Canterbury University Library, University Drive, Ilam, Christchurch Tuesday 21 April | 10AM – 1PM No food or drink 1 hour before • Free morning tea after A few minutes of your time.