By Carly Udy
Every baby is perfect, disability or not.
That's the view of Cherie and Sean O'Sullivan, who say every embryo is precious regardless of genetic inheritance.
The Matua couple have two sons with Duchenne muscular dystrophy and have spoken out about pre-implantation genetic diagnosis (PGD), which involves gene-testing embryos before they are implanted into the mother.
Their comments follow a report from University of Otago researchers who said public funding for human embryo testing should be made available for the most urgent cases. They argued it would not spark a flood of "designer babies".
Mrs O'Sullivan said while she could see the benefits of gene testing, she also saw a risk of it being abused.
"If it is used for designer babies then I would disagree with that, because I think that's disgusting that you can decide what colour your children's hair is going to be.
"Personally for us, I would not discard a fertilised embryo because I believe once it's fertilised it's a baby, even though it is little. I would have made the same decision that I made. We didn't test for the children because we knew we wouldn't terminate if they had it, even though it is really hard at times," Mrs O'Sullivan told the Bay of Plenty Times.
Mrs O'Sullivan's brother had Duchenne muscular dystrophy and died four years ago, at age 28. Duchenne is a sex-linked condition that causes progressive muscular wasting. The O'Sullivans' sons both use wheelchairs. Joel, 11 uses his full-time and Ben, 10, most of the time.
"It is really hard at times, you don't know how hard it is until you do go through it yourself. Even though I saw my family go through it ... I guess I see life and death not being in my hands in that regard. It certainly is a really hard decision," she said. "What I am hoping for, what I would love to see, especially in conditions where it's carried on by the parents, I would love for them to be able to test unfertilised sperm and unfertilised eggs so then you can fertilise an egg and then it's a baby.
"You don't have to make the decision once it's fertilised. You can actually know beforehand, but I am guessing that at this point in time that if they tested sperm or eggs they'd destroy them. Doing this is perhaps once step closer to doing that.
"Whether you choose to discard the embryo or have a termination, my personal feeling is that is the same thing. Even though it is hard and painful to watch them [your children] deal with it, I just really believe that human life is human life and you know, no one has an easy life."
She said her boys understood their disorder as much as any child would their age: "They know their uncle died and he had it but there is always hope for the future. Medical research could change the outcome.
"It's really thought-provoking to see the different personalities of your children and how they deal with grief and disability but, you know, they've got compassionate hearts and they're really loving children too. They're going to be developing into great young men."
Miriam Rodriquez, liaison officer for the Muscular Dystrophy Association of New Zealand, said the organisation advocated for individual choice.
"It's great that this option is available to the people that want it and need it and for the people that don't want it that's great too. And they can have the choice to not choose it ... I don't think we need to be prescriptive."
Genetic testing not right for Bay family
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