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The Canberra Times
The Canberra Times
National
Blake Foden

From the darkest of times comes hope

After Deanna Mott suffered a catastrophic aneurysm in 2017, her sister wrote to the people who received Mrs Mott's organs.

"I said to them something like, 'We sent out a tiny bit of hope into the world at a time we had none'," Mrs Mott's sister, Melanie Cantwell, said.

Canberra woman Melanie Cantwell at an organ and tissue donation conference on Friday. Inset: Her sister Deanna Mott and Mrs Mott's son Zac. Pictures: Dion Georgopoulos, Supplied

"It was so good to hear even the smallest amount of detail about where that hope landed."

With the two-year anniversary of her sister's death just days away, the grief is still very real for Ms Cantwell, who lives in Canberra.

But moments like receiving a letter from a couple whose lives changed as a result of her sister's generosity provide some comfort.

"The liver went to a man who wrote me the most beautiful letter about how grateful he is," Ms Cantwell said.

"His partner wrote to me about how her first partner died, and the fact that her second partner is now living and not facing death.

"These are pretty profound messages to get from people."

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Ms Cantwell also knows that her sister's kidneys helped two different people get off dialysis, that her lungs mean a grandfather is able to live on, and that her corneas enabled two others including a young boy to see again. Mrs Mott, who lived in Bendigo, also donated tissue to several recipients.

All these things provide comfort for Ms Cantwell, as does the fact her family knew beyond question that Mrs Mott wanted to give the gift of life. They had spoken about it several times.

"At a time of such severe grief, you are asked to make a decision that has such ramifications," Ms Cantwell said.

Even if someone is registered as an organ donor, their family must confirm their decision. That's why Ms Cantwell is urging people to discuss their wishes with their family, and to register to become organ donors.

She said she would like to meet the recipients of her sister's organs in person one day, if they were willing.

Melbourne woman Julie Wilson, whose son Brodie's organs saved five lives. The recipients included a young girl, Alex, who Ms Wilson met in May. Picture: Dion Georgopoulos

There are systems in place in Australia to facilitate donors' families and transplant recipients writing anonymous letters to each other.. But even when both parties want to meet, the health professionals involved in the process aren't allowed to reveal the identities of the donor or the recipient.

That's why, in 2012, donation recipient Kevin Green set up a closed Facebook group to help donors' families and transplant recipients find each other.

Using the group, Melbourne woman Julie Wilson made contact with the parents of a young girl, Alex, who received her son Brodie's liver. They met in May.

"You know that this child's alive because your son's not here anymore, and this child has part of him inside. It's all very surreal," Ms Wilson said.

"Up until then, for me, the recipients were just words on paper. I knew Brodie had saved lives, but it was just not real until I met Alex."

Ms Wilson couldn't believe some of the similarities between Brodie and Alex, from their mutual love of mangoes to the silly faces they pulled in photos.

"I could not recommend it more highly, for more donor families to meet recipients," she said.

Ms Wilson understood that some donation recipients wouldn't want to meet the families of their donors, and she respected that, but she hoped more avenues would be created to connect those who did want to meet.

She travelled to the University of Canberra from her home in Melbourne this week to attend the first organ and tissue donation conference in the world to be organised by donors' families. Families, donation recipients and health professionals all made presentations.

Dr Holly Northam, a nursing academic at the university and a member of several donation advocacy groups, has studied the Facebook group.

"The main theme that is coming out is this has been beneficial to donor families and recipients," she said.

"It's given them comfort. If two consenting adults want to meet, we seek that there should be no barrier and that they be provided with appropriate support.

"This research has found that those relationships are really important."

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