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Article Parents Respond to Critics Of Genetically Engineered Baby

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A couple have hit back at critics who have slammed their decision to have a sixth child to save their sons life.

Andrew and Olivia Densley, from Melbourne, were devastated in 2014 when their fifth child Fletcher, now 4, was diagnosed with Wiskott Aldrich Syndrome, a rare genetic disease characterised by abnormal immune system function and reduced ability to form blood clots, shares Daily Mail.

The condition is regarded as a death sentence.

Just three-weeks-old at the time, Fletcher was their second child to be diagnosed with the deadly condition.

To save his life, his parents made the brave and controversial decision to have a sixth child that would be genetically engineered.

The couple have no regrets, despite the disapproval of friends and widespread public backlash.

‘Olivia’s a bit more sensitive to what other people think and say but I don’t really care, I’ll just live my life and you live yours,” Mr Densley said on Sunday night’s episode of 60 Minutes.

‘That’s the decision we’ve made.’

Their third child Cooper was also born with Wiskott Aldrich Syndrome in 2010 but was cured four years ago following a lifesaving bone marrow transfusion from his younger brother Jackson.

The Densleys didn’t think they could be so unlucky as to have a second child with the condition when they fell unexpectedly pregnant with their fifth child, despite a 50-50 chance of the baby inheriting the condition if it was a boy.

‘We’d already been dealt a really rough blow and thought that it wouldn’t happen again and I just had hope it wouldn’t happen again,’ Mrs Densley said.

But Fletcher was born with the condition and none of his older siblings were a donor match for the youngster, who was put on international register to find a bone marrow donor.

His parents spent $140,000 over two years on several rounds of IVF to create a sixth child in a desperate bid to save their son’s life.

A Go Fund page was even set up, which raised $25,000 towards costs.

With the help of Dr Gareth Weston, the baby was genetically engineered to ensure the new addition to the family would be an exact match for Fletcher.

Mrs Densley finally became pregnant with the implanted embryo late last year and on August 2, baby Lilliahna was born happy and healthy.

While the couple admitted they wouldn’t have had a sixth child if there wasn’t a need, the couple don’t see it as a bad thing.

‘We can positively say to this child, yes, we did have you for some of your bone marrow, but it’s a good thing because we knew you were going to be OK,’ Mrs Densley said.

But Fletcher isn’t out of the woods just yet, despite the family’s renewed hope.

While Lilliahna is a 100 per cent match, the transplant has risks.

The family also have to play the waiting game until Lilliahna is 10kg before the bone marrow transplant can take place next year.

‘We want you all to know that we truly appreciate the continued support you’ve given to Fletcher and our family throughout his journey to cure him of Wiskott-Aldrich Syndrome,’ the Densleys posted on Fletcher’s Fight Facebook page on Sunday in lead up to the segment.

We hope much needed awareness is raised for the Australian Bone Marrow Donor Registry from the 60 Minutes episode to hopefully help other people in need of bone marrow.’

Public reation

Public reaction to the 60 Minutes story was mixed with many people branding the Densleys as selfish.

‘Why go risk an unhealthy 5th. Some people cant even have one child. Then to spend over 100 grand to have a healthy 6th just to save the 5th that they shouldnt have had,’ one person commented.

Couldn’t even watch the end of this story, made me so angry! These people should be ashamed of themselves.’

However, there was also lots of support for the Densleys.

‘Put in the same position I would have to think along those lines, to save a child I had given birth to. How can you judge? Walk a mile in their shoes and see if you would want to save your child,’ one woman commented.

Wouldn’t all parents go to any lengths to save their child’s life?

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Comments

  • To those defending the couple, under the stance that if we were faced with the issue at hand, we would have done the same? No.
    This is coming from someone born with genetic and chronic illnesses and diseases myself.

    Selfish, adjective: lacking consideration for other people.
    In this case, their own damn newborn daughter.

    They were warned of the risks of conceiving a 4th child. A 50/50 chance. A coin flip, and they would only get one try.
    To be faced with that chance, but disregard the warning and carry on with the pregnancy is, yes, selfish.
    The mother said the 4th pregnancy was unplanned, but honestly, that excuse is pathetic. Birth control is easily accessible in Australia. Abortion is a damned option. But to know that the chance of another small, innocent and helpless baby being born with the same excruciating, painful and what was believed FATAL disease was right there? Really?
    Is their dream of having a large family more important than the well-being and life of a child? A human? It takes two seconds to put a rubber on. Two seconds to swallow the pill.
    But no, the poor boy was born with the disease they were warned about.

    The thought of bringing a child into the world to serve a purpose is disgusting to me. Children shouldn’t need a purpose, they build their own lives by their accord.
    To essentially engineer the baby girl so they could harvest cells from her body is abhorrent.
    Not only is it a medical issue, but with the child being put through a painful surgery that doesn’t benefit them in the slightest along with the child being so young that the procedures associated risks could easily kill the poor girl is something akin to damn torture. But it’s a legal one as well, with the procedures being so painful that those parents are neglecting the child’s wellbeing. It doesn’t matter if the kid may or may not remember this in the future.
    Defending abuse with the excuse that in time it will be forgotten is inhumane. Abuse is Abuse. Harm is harm no matter the damn age.
    Selfish, adjective: lacking consideration for other people.

    There was no love or consideration for that little girl. Only for the little boy.

    I was born into this world by chance, and im faced with chronic pain every day.
    And i would never, want my sibling, not matter HOW old, to suffer any pain because of my condition.

    Selfish, adjective: lacking consideration for other people.
    Face the damn music.
    And for gods sake, if you want to have a kid-
    Consider the life you’d bring them into.

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  • People love to shout loudly that their morals and ethics are so much stronger and better then others. I honestly think its just their way of trying to convince not only others but themselves. If one of my kids was going to die and I was told this was the only way to save them then I would do it and the awesome thing is I would ahve another child to love as well.

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  • I hope it all worked out for them and the little ones

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  • This is interesting, I think I missed the 60 Minutes story

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  • Hopefully only one procedure will be required. As much as the donations need to be promoted as a parent I would not have made any public statements. There is a huge risk it will impact on the 2 children later in their lives.

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  • I’m sure we’d all think along the lines of saving our child any way possible. At the same time you don’t know until the time, unfortunately, comes upon you. Not sure I could do this. Wishing for a positive result for Fletcher. Hope you all get to spend many happy years together as a family

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  • I honestly don’t know what I’d do in this situation. But still not sure how I feel about genetic engineering to begin with. I guess most people just would have ensured that they didn’t have another baby if there was a risk and maybe adopt?

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  • Wow people can be cruel none of us know what we would do if we were put in that position but I hope no one else has to find out. Hopefully them speaking out gets more people on the donor registry

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  • Aw bless, such a hard call. I sure can imagine to do anything for the life of my child. We can’t really judge indeed as we aren’t in these parents shoes. I’m positive making this decision was hard for them.

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  • How can anyone judge these parents. In their situation and if I had the money available, I would do the same. They will love all their children the same and just did what they had to do to save their son’s life and stop his suffering.

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  • It’s hard to judge unless you were in their shoes. I for one, would do anything for my daughter.

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  • Wow, I have no idea what I’d do if my child had this condition. Not sure if I could put another child of mine through surgeries and suffering also without them being old enough to make that choice. It’s too easy to judge though when you have not been placed in there shoes. I wish the family the best of luck for their little boy and their new daughter.

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  • I can empathize and would raise hell itself to save my child if I had to. But to bear another child specifically to save an existing one gives me chills. She won’t have a choice of wether she wants to do this or not. Not to mention how she’ll feel looking back on this interview 16+ years from now and the way that they refer to her.

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  • I feel like the ‘genetically engineered’ child will suffer for the rest of their lives having to go through painful procedures for their older sibling and knowing that was why they were borne

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  • Oh gee. I wouldn’t call them selfish, but I do feel they’ve put a big psychological burden on that little girl for the rest of her life.

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  • I honestly couldn’t say that I would be prepared to do this or not …. not unless I was in the exact position as them ….

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  • If we were in this parents’ position, maybe we would have done the same. You’ll never know till you face the same exact situation.

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  • This is their business, not mine, personally I couldn’t do it but I also have never been put in the position to consider it, as parents we do everything we can to ensure the health and safety of our children

    Reply
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