Andrew and Olivia Densley had four healthy, happy children.
Then their four-year-old son, Cooper, was diagnosed with the fatal genetic illness, Wiskott-Aldrich Syndrome.
According to the US National Library of Medicine, Wiskott-Aldrich Syndrome is characterised by abnormal immune function and a reduced ability to form blood clots.
Children with the syndrome get extremely sick from common coughs and colds, and normal sports injuries or knocks to the head can lead to fatal bleeding in the brain.
The Densleys, from Melbourne, told their story to 60 Minutes’ Tom Steinfort on Sunday night.
They explained that luckily, Cooper’s younger brother, Jackson, was an exact genetic match and could provide him with a lifesaving bone marrow transplant.
Why the Densleys decided to have a sixth child…
However, just as the family was recovering from the ordeal, Olivia discovered she was pregnant again.
If the baby was a boy, there was a 50 per cent chance he would be born with Wiskott-Aldrich Syndrome.
Faced with the possibility that this new baby could also have the fatal syndrome, the Densleys decided to roll the dice and go ahead with the pregnancy.
“I just felt like surely we wouldn’t be that unlucky to get it again,” Olivia told 60 Minutes.
“I just had hope.”
Fletcher Densley was born on May 19, 2014. Just three weeks later, he was diagnosed with Wiskott-Aldrich Syndrome.
“It was heartbreaking,” Olivia told the program.
“We know what he’s going to go through and I guess I did have a little bit of guilt of we did this to him.
“It was a bit of a reality of, ‘What did we do?’”
None of his four siblings were a match for a potential bone marrow transplant.
That’s when Olivia and Andrew decided to have another baby. Their sixth baby – a girl – was carefully genetically engineered to be an exact match for little Fletcher; a decision they are fiercely defending.
“I have thought about down the track when the child is older and it does hear about why it was conceived, I do worry about that about what I would say and how the child would feel,” Olivia said.
“But at the moment I feel like it’s not a bad thing. I feel like we can positively say to that child, ‘Yes we did have you for some of your bone marrow but it’s a good thing because we knew you were gonna be okay’.”
Olivia and Andrew’s story has been compared to the Jodi Picoult book, My Sister’s Keeper. But the couple addressed critics who have slammed their decision to have a sixth child to save her older brother’s life.
“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,” Andrew said.
On August 2, the sixth child, Lilliahna, was born. She has to be 10kg before the bone marrow transplant can take place next year, so the Densleys are hoping they won’t be dealt any more blows.
When asked if they were considering baby number seven, the Densleys were adamant; “No thanks. I think we’re done.”
Posting on their Facebook page in the lead up to the segment, the Densleys wrote:
“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.”
Explaining that their situation might be able to help others, they added:
“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.”
Top Comments
They should not have had a child with the knowledge that he would be born with this disease. I find this abhorrent. Children should NOT be brought into this world to be used as spare parts.
This is just so wrong. I don’t know how this can even be ethical to genetically engineer a child to save another? What about this genetically engineered child’s rights? I read in another article that this child has to be 10kg before she can donate her marrow (this 6th child has been born and is a girl). That means she can still be a baby under 1 years old! I find this couple to be incredibly selfish to go on having more children knowing the risks of their hereditary illness. And if you could genetically engineer this child why didn’t they do that with the 5th so that they could avoid it having this illness. So unbelievably selfish. I absolutely feel so sorry to these two children born with this illness but also for the children who provide or will provide their marrow.
Selfish? To do what has to be done in order to SAVE THEIR CHILDS LIFE? How about keep your fingers crossed you are not faced with the hardest decision imaginable and judge a little less. They are loving parents choosing to open their hearts to a bigger family in order to not watch their baby die. Hardly a selfish act. You clearly have no idea the lengths u would go to to keep your child alive. They clearly are going to love and care for ALL their children the same. Ppl have kids for a lot worse reasons than this. Ie to fix a shit relationship.
I agree, this is one of the least ethical things I have ever heard of. They literally grew a whole other person to provide bone marrow, and who won’t be able to consent to the operation. I feel sorry for the kid with the diesase but this should not even have been an option- and imagine the outrage if this happened in China or somewhere, they would totally be accused of ‘organ farming’. No ethics committee in the world would approve this as a form of treatment, and they’ve only been able to do it because there aren’t any bodies managing the ethics within a family. Looks like it might be time for one.
It’s selfish to go on to have a fifth child knowing that there is such a high chance of it having the hereditary disease - knowing the pain and suffering that poor child would go through and the chances of not finding a donor.
I never said they wouldn’t love their children. But as a mother I would never go on to have another child if I knew the suffering it could have because of a hereditary disease. I would not willingly have a child go through pain while it waited for a donor and THEN genetically creating a match knowing that that poor child would be subjected to an EXTREMELY painful operation - an operation against its will as it CANNOT make the decision. For example if as adult I had to have a bone marrow transplant to save my brother I would - but I am a consenting adult who knows what is involved.
Clearly you have not thought of the repercussions to the baby girl and are only thinking of the sick child. I don't think it is judgement to say what is basic common sense. That a baby shouldn't be designed just to have their body autonomy removed and be a forced donator. I don't think it is judgement to say every human being should have rights to their own body. I think that is common sense. Sometimes some things require judgement. What about the designer baby's right to not have parts taken from them without their consent? What about the baby's right? You and others are forgetting this, and ONLY thinking about the sick boy. Well, what about the little girl's rights? Does she not count?
Try thinking more DEEPLY about the issue.
Edit: As for "they are clearly going to love and care for ALL children the same", all evidence to the contrary! as others have said, she continually referred to new baby as 'it'. When Lilliahna was born, their first thought and comment wasn't how beautiful she was, or how lucky they were, it was purely 'now Fletcher has what he needs'. Not once did they comment about the girl herself. Not once. It was all, oh great, what Fletcher ordered is here. Their 'it' and their lack of attention over Lilliahna herself, their lack of comment on her, speaks volumes. And not in a good way. The Mum literally said she wasn't really even thinking about her newborn when she was holding her for the first time! Doesn't that ring alarm bells? The reaction of the mother to the girl's birth must concern us all. The disassociation from the girl was clearly seen, 'it' and 'the child' both after SHE was born, is a clear example even if her admission of not even thinking about her when holding her wasn't. So, no, she most definitely clearly is not going to love the new baby as much as her sick son.