Desperation to find perfect match

Keri and Chace Topperwien

You are walking down the street, you notice the person walking towards you, you have never met them, they didn't look familiar, they have different hair and skin colour, they don't even speak your language - what you can't take for granted, is that they have no connection to you.

As unlikely as it may seem, you can never truly know.

To be a bone marrow match for someone, your genetic paths have to be linked somewhere, it is not like red blood that can be donated to anyone with the same blood type. It is much more complex and unique to your genealogy than many people think.

The aim of this piece is to share the feelings of desperation and helplessness that parents can feel when searching for a bone marrow match. I speak from our experience but also echo the feelings of many families that we have met along the way, a number in our home town.

There are so many instances where parents/caregivers feel helpless when looking after a child with cancer or serious illnesses. Every morning at doctors rounds, there is the worry that they have come with bad news. At the time I didn't fully appreciate the seriousness of the following sentence "there are no bone marrow matches for Chace".

I heard it, I understood what the sentence meant, but I didn't know how serious the consequences of having no match would be. This was because I felt relieved in the knowledge that there were over 19 million (at that time) donors worldwide.

Statistics lulled me into a false sense of security where I presumed that we would find a match. But we didn't. Like many families, desperation visited again. We went into mission mode - to do as much as we could to find a match. Ryan and I were tested, but we only make up 50 percent of Chace, the most likely chance of a match within the family is a sibling, of which Chace had none at the time.

Our immediate family, so desperate to get tested and be that match, were told that if we as parents were not a match, they were highly unlikely to be. There would be more of a chance of a stranger being a match. So to revisit the opening passage, how are we to know, that that "stranger" isn't in fact connected to us somehow?

Because of our experience, we have made bone marrow awareness one of the cornerstones of the Dream Chaser Foundation. We are committed to doing our part to encourage more people to consider bone marrow donation.

Along our journey, we have learnt a lot about the process of donation, statistics, and perhaps most importantly, obstacles that impede on the rate of donation. These can be fear of process, lack of understanding about what's involved and cultural ideas about donation. We often come across the following comments and questions "can I save it for my whanau?"

"I don't want it to just go to anyone!" and "How do I know they will collect it in a way that is culturally appropriate?".

We appreciate and respect the cultural significance of the body and are often challenged on these points. However we welcome these discussions because it gets people thinking and talking.

To be a bone marrow match for someone means that you have a connection through your genetic makeup to that person. While you cannot save bone marrow for a specific family member, it is important to consider the broader notion of whakapapa and the preservation of future generations.

In terms of cultural sensitivity around the donation process, New Zealand Blood has worked hard to ensure that they listen and value cultural ideas about donation and how culturally significant the process can be.

As parents who knows how difficult it is to hear that there is no match, we sincerely thank everyone who has joined the bone marrow registry and to those who are considering it. I am on the bone marrow registry and I hope that one day I am called up and get the opportunity to give a gift that is truly priceless, life.

- For more information on how to become a bone marrow donor visit the New Zealand Bone Marrow Registry.