Bone marrow donor registry pleas for more diversity to help save people with cancer – ABC News

Updated October 02, 2019 17:25:10

The hardest thing Daniel Roberts has ever had to do was watch his young niece Remy battle leukaemia.

On a warm summer day five years ago, the Warrnambool-based real estate agent was playing horseback rides with the two-year-old, carrying her around his brother's kitchen as she giggled with delight.

"The next day she had bruises all over her, and people thought I'd been a bit rough with her on my back," he said.

"She went to the doctor for a check-up and blood test. That's how we found out her bone marrow was failing."

Remy was diagnosed with aplastic anaemia, a rare condition in which the body stops producing enough new blood cells.

The once-energetic and vivacious girl became lethargic, and covered in deep bruises.

Her only hope was a bone marrow transfusion, but finding a match was easier said than done.

"I wanted to be able to save my brother's little girl, but no-one in the family was a match, which was quite unbelievable," Mr Roberts said.

Remy's condition deteriorated she required blood transfusions every seven to 10 days but thankfully an unrelated donor was found.

Now six, she is back at school and getting stronger every day.

"Remy, she was right on the cusp of not being here with us, so to see her with us today is absolutely amazing," he said

Despite not being able to help his niece, Mr Roberts stayed on the bone marrow donor list only one in 1,500 donors are asked to donate in any given year.

But just two years after a random donor saved his niece's life, Mr Roberts got the call.

"I'm six-foot-three and pretty bulletproof. I'm tough as nails and never get a tear in my eye or anything like that, but I couldn't stop actually crying," he said.

"I just couldn't believe I got to pay it back so quickly."

His donation helped save a five-year-old boy who was also fighting aplastic anaemia.

"The amount of tests and all that you go through is nothing compared to what that little fella was probably going through," Mr Roberts said.

"But that said, I'd do it again in a heartbeat.

"My niece was dying. She got a random match from somebody, and now she's fantastic. I just can't believe you can pay someone back so quickly."

Every 40 minutes, someone in Australia is diagnosed with a blood cancer.

And for most, a blood stem cell or bone marrow transplant from a stranger is their only hope.

But if you are Indigenous or ethnically diverse, the chances of finding a match are much harder, because donors need to have the same genetic background as the recipient.

Less than 1 per cent of people on the bone marrow donor registry are from Aboriginal or Middle Eastern background, less than 3 per cent are Asian, and less than 5 per cent are Pacific islander.

The head of the registry, Lisa Smith, said despite Australia's multicultural make-up, eight of every 10 people on the registry were of north Caucasian background.

"The registry itself is largely unknown and really lacking diversity that reflects Australia's multiculturalism," she said.

"It genuinely is one-in-a-million odds to get a match, so when we ring a donor, they could very well be the only person on the planet that's able to help that patient."

The Australian Bone Marrow Donor Registry is trying to find 5,000 new donors this year.

"We need donors that are young and ethnically diverse, because our current donor pool, if characterised as a person, is a middle-aged white female," Ms Smith said.

"From a transplant clinician's perspective, they're looking for donors that are young between 18 and 30, are male and are reflecting the ethnicity of their patient."

Pamela Bou Sejean knows the importance of a strong donor list better than most.

She was diagnosed with Hodgkin lymphoma in 2010, and after chemotherapy and radiation failed, she was told her "last chance" was a stem cell transplant.

Stem cells from the umbilical cord blood of a Spanish donor gave Ms Bou Sejean a second chance at life.

"To know someone's out there that's actually saved my life, 'thank you' doesn't seem enough," she said.

She went into remission in 2012 and founded the charity Ur The Cure, which aims to demystify stem-cell donations and promote greater diversity on the donor list.

"Often it's people's last chance for a cure, and you need a stem cell match with someone who shares an ethnical or cultural heritage."

There is a 30 per cent chance that a match can generally be found within a person's immediate family. After that, it gets harder.

"It's kind of like winning TattsLotto, but it's not winning money it's winning the chance to live."

For Warrnambool mother Julia Thompson, storing her umbilical cord for stem cells was a no-brainer.

Following her own cancer battle, Ms Thompson gave birth to her son Hugh in 2017.

She is now in remission, having used her stem cells as part of her treatment.

It was that treatment that inspired her to store Hugh's umbilical cord and associated stem cells for future use.

"It's difficult that it's only available in selected hospitals in Australia, but it's really an amazing insurance policy for him," she said.

"We knew that because of my history with cancer, the likelihood of Hugh having siblings was very slim.

"Given my history and the fact that stem cell blood saved my life, I knew how important that was. It's really something to consider for the future of your child and family."


First posted October 02, 2019 06:54:09

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Bone marrow donor registry pleas for more diversity to help save people with cancer - ABC News

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